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Wednesday, July 12, 2017

Pat on the Back

Sometimes when I reach the brink of exhaustion and overwhelm, I literally talk to myself out loud. I say, “You got this, Carrie. Doing great. Awesome job. You totally rock. Keep going.”

 Yesterday, I muttered those words to myself as I tried to survive the insanity that is our summer, and Ella trailed behind me and demanded that I stop moving. I asked why? She came to me, and said, “Bend down.” I did as I was told. She took her small hand and patted my back. She said, “I heard what you said to yourself, and you ARE doing a great job, and you deserve a pat on the back!”

Not only did she make me laugh, she made me realize that we’ll get through this. I got this. And I do deserve a pat on the back.

We found out this week that, like his brothers, Aidan has PANDAS, which is strep that affects your nervous system. He also has the staph infection in his sinuses called MARCoNS. He and Ella have parasitic infections. Ella has some sort of autoimmune reaction brewing in her body, so she is having further testing done. The doctor wonders if the test result is due to celiac disease, given the fact that all the boys and I have the big bad combo of the worst celiac genes, but Ella is being checked for other autoimmune diseases as well. Ella is also getting checked for PANDAS, but I can guarantee you that she has it.  

Every summer, I think that this summer couldn’t be as bad as the previous ones. And every summer so far, I’ve been dead wrong. Granted, this summer we’re dealing with a host of crazy illness issues that make life super difficult, but still, come on. When does this Mama get to catch a break? Looking back, I realize that each challenge we have faced has seemed overwhelming, but has prepared me for the even more challenging days ahead. Hopefully someday we can descend the Challenge Ladder, and have fewer difficulties instead of more.

My summer has been spent as a nurse to six people. I call it The Newsom Ward. Every person in our family has a certain schedule of pills- some of which we increase and decrease at certain intervals, some that need to be taken before 8 am or after 5pm, some with food and some without. Then we have nasal sprays (Some kids have 2, some have 3. Some sprays go in just one nostril once a day, some go in both nostrils twice a day), detox regimen, foods they need to avoid, foods they need to have more of, allergies, sensitivities, doctors’ appointments and therapies. I have sticky notes lining the kitchen, things like “NOSE SPRAYS!!” and “NOON MEDS!!” because otherwise I forget. Because, like my children, I have my own health issues, many of which cause exhaustion and brain fog. So to keep it all straight is quite a miracle. Luckily, I have sticky note help. And a binder filled with a calendar, treatment plan, schedule, and symptom list for each family member.

A big challenge is the fact that we all need the same things, like detox. Making my children take a bath in general has never been a successful experience, and now I have to make them take Epsom salt baths several times a week. Sometimes, I’m a really mean Mama and make them do dry brushing before their bath. (They actually love that, it feels nice, although prickly.) Convincing teenagers that Mama is right and they need to sweat and drink lemon water and take baths and do nose sprays…it’s a constant battle. I try to stealthily get the kids to cooperate, by doing things like disguising exercise in the form of a walk for the dogs. I’m trying to lead my pack of people toward healing, but still have all the normal things to conquer as well, like keeping my kids off electronics, organizing play dates, going to the park and the pool…I’m quite sure I may be losing my mind.

The worst problem we have is the ever-present anger. Good lord, I’m sick of it. Our doctor assures me that we will get through it, and come out the other side calmer and healthier. In the meantime, it’s debilitating. The rages and irritability are mind-boggling. But now we know that these are symptoms of a physical illness, not a psychological one. I just hunker down and roll with the waves of anger.

I think it’s ironic how during the times when you need self-care the most, it’s the most elusive. I do what I can to take care of myself in the midst of the Crazy. Alex and I always find a way to sneak into the living room or to the back patio alone for even a few minutes a day. A stolen coffee date in the morning before little bodies are awake, or a secret conversation in the evening when the kids are winding down from the day. I have at least 47 craft/remodeling projects going at all times, because creating is my bliss. I talk to myself, cheering myself on, reassuring myself that I can make it through another crazy hour this summer. And, who can forget my sweet 7-year-old, always there with a pat on the back, letting me know she sees and appreciates all I do. 

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