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Tuesday, July 11, 2017

Our Vacation Apart

Over the 4th of July weekend, I sat in my parents’ house in Door County, watching through the trees as the sun rose over Lake Michigan, missing half my family. Half of us had to stay home for the trip, because some of us are fighting too many illnesses to be able to travel. When you’re a family chock full of special needs, you just do what you have to do to make the most people happy and calm. Sometimes that means I don’t get to be with my best friend, my hubby. That stinks. But at least the kids are all doing fantastic for once.
 We recently found out that Ben and Jonah are very sick, and have been for many years. They have multiple parasites, viruses, and infections. The only thing they did not have that our doctor tested for was Epstein Barr Virus, which causes Mono. Ironically, this is the only thing our old pediatrician ever tested them for! He kept testing for EBV, it kept coming back negative, and so year after year he kept saying, “I don’t know why your boys seem so sick! They don’t have EBV!” Gr.

The boys are taking medication to battle all of these buggies. Detoxing from all of this has proven to be mighty difficult. We also discovered that Jonah’s cortisol is way too low, and Ben’s is way too high. (I’ve always said, together they make one normal, healthy person!) That means Jonah is always dragging, without enough gumption to get up and do anything, and Ben is always in fight or flight mode. The boys have epinephrine surges which cause their rages. Their adrenal glands are burnt out, thyroid is struggling, immune system is so shot. The doctor hypothesizes that the boys were born with Lyme disease which I gifted them while pregnant, and that weakened their immune systems from the start. This enabled any virus or parasite that they came into contact with to take up residence, without their immune system able to mount a defense. Pretty scary. What’s even more scary is that they have been so sick for so long and no other doctor was able to figure out why.

But that’s in the past and we’re moving along. We have a fabulous team of medical helpers now, who are absolutely on our side, going above and beyond to help the boys heal. OCD, anxiety, sensory issues, rages, and irritability have all had an uptick while we’re doing the treatment for these nasty buggies. Which leads us to why half of us were in Wisconsin and half in Illinois. We were supposed to all come to visit Nana and Papu, but Alex and I realized that the boys just can’t successfully be together because they set off rages in each other, and some of us are just too sick to travel well right now. So we decided to, once again, listen to what our children need and put their needs first. Which means Alex and I weren’t together for this trip. But our kids were so peaceful and happy that weekend, and that meant everything.

That meant everything especially coming off of the last couple weeks that we’ve had. Wow, has it been a struggle. Rages and irritability have grown, Aidan and Ella are worn out because of living with it, Alex is weary from the emotional upheaval, Ben and Jonah don’t feel well, there is no respite for me…ugh. Summers are always pretty miserable for us to begin with, then you add detoxing from illnesses, and whew. Nightmare. I try my best to keep everyone as separated as possible, so they can be as calm as possible. I think through who will be able to handle an outing, or who will be too overwhelmed with the car ride, the noise, the heat, the people, the walking…sometimes some of the kids have to stay home. I see friends post on Facebook their pictures of their big, beautiful families at parks, zoos, vacations, and I don’t have any summer pictures of our whole family. It makes me sad. I tell myself that I’m doing the best I can to handle a very tricky time in our family, and soon the kids will be healthier and happier, and we’re doing the best thing for everyone by knowing who has to stay home and who can go on outings, but it still makes me sad.

Through this journey of special needs, I’ve come to realize that I have to zero in on the moment, grab it by the neck and just live it to its fullest. It’s best not to compare my life to others’, it’s best not to think about what I wish life looked like. When I watched my two kids playing happily on the beach at Nana’s house, and I heard that the two at home were having a fabulous time with Daddy, I knew we did the right thing for our little clan by not being together on this trip. Being together can be stressful. It’s good to have a break from stress, to let our bodies relax and feel peace for a few days. 

Sometimes it’s hard to do what’s best for our family; it gives me a twinge of sadness that we can’t just be like everybody else. But I know this respite was desperately needed for all six of us, so I’m grateful that we were able to have some calm days. I guess that is more important than a family picture on Facebook.

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