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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. 

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.

Thursday, May 11, 2017

Ocean of Love

Our kiddos can be pretty angry. Irritability is the norm, always has been. Our babies were impossible to soothe, everything made them feel on edge. They have never been good sleepers. We walk on egg shells, never knowing what will set off a bout of anger. When the school bus shows up in the afternoon, I know for certain there will be hours of meltdowns ahead. The kids hold all their “stuff” in all day long, and home is their safe place. The place they know they are unconditionally adored. The place they know they can let it all out, the good, the bad, and the really angry, and they will still be loved. 

We have a lot of anger living with us. Sometimes, as my children are falling apart after school, they will say they had a really good day. As they cry and fight, they will tell me they wish they could feel happy, but they can’t and they don’t know why. They will weep and pick fights and say mean things, and in the same breath beg for my help because they don’t know how to calm down. It’s tough being the Mama that everyone needs help from. Especially when you’re not quite sure what the underlying problem is.

Now we have more answers. Now we know it’s not Bipolar Disorder, it’s PANDAS. 

PANDAS is an inflammation of the nervous system, caused by strep. PANDAS has been living with us for many years, hiding in plain sight. PANDAS can cause Bipolar symptoms. Inflammation in the brain can make a poor kiddo feel like raging for no reason. Inflammation can set off a volcano of a reaction, when in reality the trigger was small and innocuous.

Having lived with these types of symptoms since our babies were tiny, we’re used to thinking eight steps ahead, trying to make sure that nothing will set off a rage. But sometimes life happens. Sometimes you can’t always control everything in your child’s environment. Sometimes, especially when you have four kiddos who react the same way to triggers, life can be unpredictable and overwhelming. We prefer to stay home, not to go on big excursions. Big excursions bring unpredictability: meals aren’t at the right time, fatigue sets in, sitting in a cramped van with your siblings makes you feel irritated, your shoes might not be tied tight enough, the sun might be too bright or the clouds might be too cloudy, there are too many people, there aren’t enough potty stops, you might feel too hot or too cold, there is too much unknown…all these factors can set off a rage. It’s tough to walk the line between total isolation and some life outside our comfort zone.

Our family has spent a lot of time in therapy. We’ve dealt with many issues over the years, among them being how to handle rages. The kids have learned techniques to stay calm, or become calm when they are angry. Some of the kids are on medications for stabilizing moods so that we can maintain a more even keel of emotion in our home. Despite our best efforts at teaching our family to be calmer, we still struggle with Anger. We have scars from the years of living with Anger- both emotional and physical. It has not been easy.

Life is definitely better, and less angry, than it was a few years ago. But Anger still wakes with us each morning. Anger still follows my kids home from school. Anger still takes a place at our dinner table every evening. Sometimes the first words out of my darling’s mouth in the morning go something like this: “I hate the spots on my ceiling.” (Mama isn’t a professional painter. Sometimes I leave a stray spot of wall paint on the ceiling. sorry.

You never know what will set my babies off. The routine of getting ready for school is fraught with danger. Danger of Anger intruding, and then not being able to reel my child in from the rage and make it to the bus stop in one piece. The afternoon routine of homework, therapies, and play time is also wobbly with the prospect of problems. And then there’s dinner time, bath time, bed time. Forget it. All one big blob of possible rages.

Now don’t get me wrong, I know all kids can be irritable. I know every human gets angry. I’m not talking about that “normal” level of emotion. If you have a child with Anger issues, you’ll know what I’m talking about. It goes beyond “normal.” It is unusual and atypical, unpredictable and persistent, all-encompassing. And a massive pain in the butt to deal with.

Once in a very great while we have a perfect, stellar, gift of a day. A day when the stars align in the heavens and all of my children are calm at the very same time, for more than three minutes. We may experience Anger, but at normal levels, not obscene levels that are typical for us. I can count one day so far this year when that has happened. Last year we had two days like that. I know the exact dates. No joke. Those days are quite an enormous blessing. I am always curious if that is what life is like with typically-developing kiddos. I am shocked and amazed when we have one of our Wonder Days, because I am blown away by the wonder of no walking on eggshells, no meltdowns, no arguing, no rages that take on a life of their own and destroy our day.

When you live with constant irritability and rage, you’re always on edge. You never know what will irritate a kiddo into a full-blown meltdown. You never know when it’s coming or how bad it will be. You don’t know how long it will take them to recover their peace. So you live on the precipice of fear every day, all day long. The fear sits in your stomach, making it churn, making you sweat. The fear burns out your adrenal glands, your thyroid. It gives you PTSD. It heightens your anxiety and drives away sleep. It makes you jumpy as hell.

BUT. Living with rage also makes you appreciate more than anything in the Universe those few and far between times when all is right with the world. When our family completes an activity together and there aren’t any rages or meltdowns, it’s monumental. And amazing. And so so wonderful. 

The kids are not in control of their Anger most of the time. Their little brains are on fire, so they can’t be held totally responsible for their actions or emotions. It would be like expecting them to be able to lower their own fever. Totally out of their control and impossible. They can not control their anger when we get to Raging Mode. I look in my raging child's eyes and know in my heart that they are helpless over what is happening to their bodies. No amount of therapy or medication or discipline makes any difference if your brain is inflamed and your body is out of control because you are ill.

I had a scene pop in my mind the other day of a dagger slashing through the ocean. At first I was like huh, no clue what that means. The more I pondered my vision, I realized the dagger is my children’s anger and the ocean is our family’s love. Sure, the dagger is dangerous, sharp, and horrifying. But our love, well, that’s an endless, bottomless ocean. Like a dagger through an ocean, the Anger that my children can’t control can slash through our family time after time, trying to rip and tear our love apart. But the anger can’t make a dent in this ocean of unconditional love. No matter what, our love will heal the spots the anger tried to demolish. Sure, we have some wounds. But the ocean of love we have for our children will envelope those scars like a soothing balm. No permanent damage will be done by the Dagger of Anger. Our Ocean of Love is too powerful.