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Saturday, October 14, 2017

I'll Find Myself Next Year



Every Fall, I think THIS is the school year where I will take my life back. Every child will happily go to school every day without a fight. I will have hours to myself each week day to sew weighted blankets to make other families happy. I will do yoga, walk, write, meditate, create. I will have time to remember who I am after being entrenched in Motherhood for so long without coming up for air. I make plans. And God laughs.


Just when I think a school year is set to go off without a hitch, hitches appear out of thin air.

Our doctor has recommended that Ben and Jonah begin an IV treatment that boosts their immune system so they can fight the war against their Lyme and PANDAS (strep that attacks the nervous system). I mobilized our school team, and we set up homebound tutors for the classes the boys will be missing as they do their treatment- every day for at least three weeks, but maybe six. Jonah started the treatment first, and Ben will begin in a couple weeks.


A week ago, Jonah got a picc line. The day before my birthday. The idea of a picc line, that goes from an insertion point in your arm all the way through a vein up to your heart, completely freaked my boy out. It freaks me out too, but I hide it. The nurse told me I couldn’t be with Jonah while she put in his picc line. I was so angry. But I held it together until we got home and then I called the clinic and let them have a piece of my mind about letting Mamas be with their babies who have anxiety during such a traumatic procedure. The clinic apologized profusely, and said they will make sure this never happens again. Thank you very much.


Jonah was so brave. After he came out of the room from the procedure, he turned gray and had to sit down so he didn’t faint. It was a very hard weekend. Anxiety kept getting the best of him, that idea of the tube snaking through his body. He needed me all weekend; there are some times when one of my kids needs me like air, when they have to be almost touching me at all times in order to survive the extreme anxiety they’re experiencing. That was how our weekend went. Over the past few weeks, we’ve had a large variety of musical beds happening. We put a mattress on our floor for Aidan, because he couldn’t sleep in his own bed because of his worries. Ella finds her way into our bed most nights. Last weekend, Jonah had to sleep in Dad’s spot so he could be with me in case anything happened with his picc line during the night. A few nights ago, Aidan got my spot in bed because he got braces on his bottom teeth and was in such excruciating pain that he rolled on the floor, screaming for hours.


We started Jonah’s IV treatment this past Monday. On the way to the appointment, Jonah was extremely panicky, as any normal person would be. He really really did not want me to make him do this. All weekend he kept asking me if he really had to do this. If this was something that would really help him. Why did he have to go through this agony? I kept calmly supporting him: It will all be ok. This is the worst it will get, everything after this point will be easier. This treatment will absolutely help you. This is going to be so worth it, and when we look back we’ll see what a great idea it was. Temporary hurt for long term gain. Anxiety comes from not knowing how something will be, and after you do something even one time, you won’t be so worried. Hour after hour, I reassured my boy. Minute by minute, walking next to him through this crazy life that seems to be too much so often.

I worried Jonah would refuse to get out of the car once we arrived at the doctor. But we started joking and giggling, and the anxiety lightened just a little. Jonah cooperated beautifully. His nurse was wonderful, explaining everything as it happened. Jonah got all hooked up to the medicine, turned gray for a little while again, and then relief flooded him as he realized this wouldn’t hurt. He wouldn’t feel anything actually. He realized it was actually so easy. He said he was just fine with doing this treatment, and excited to see how it might make him feel better.


Last week, Aidan complained of having blind spots in his vision. I asked him more about it, and it turns out he had been looking at the sun. Aidan’s anxiety and OCD are killer right now. He feels the compulsion to look at a freckle on his arm, or a bracelet he wears, every few seconds. He was outside one day and had long sleeves on, so couldn’t see his freckle. He didn’t have his bracelet on. So he felt the compulsion to look at the sun. A lot. I was instantly alarmed.


We got him in to the eye doctor. She wanted him to see a retina specialist. Both doctors needed to put drops in Aidan’s eyes to dilate them, which is sort of like trying to catch a slippery eel to pry his tiny eyes open and put drops in them: absolute torture. Poor Alex took Aidan to both appointments, so now he knows what it’s like when I go to all these doctors with kids. Sorry, babe.


The retina specialist said that Aidan has solar retinopathy. The sun burnt holes in Aidan’s retinas. The doctor thinks the holes are starting to heal, but it is imperative that Aidan does not look at the sun anymore. Duh. But when it’s your OCD, that’s hard to reason with.

Last weekend, I celebrated my birthday. I took some of the kids to a pumpkin patch- which is outside. I had Aidan wear a hat and sunglasses, AND his bracelet, AND a short-sleeved shirt so he could see his freckle. I suggested that instead of looking at the sun, Aidan tilt just his eyeballs up and look at the brim of his hat. He broke into a grin at this idea and said he’d try.


Aidan has had such extreme anxiety and OCD lately that getting to school has been very difficult many days. I met with his school team last week to talk about ways to support him better. The team decided that the best bet was for me to pull Aidan out early every day (about the time his anxiety ramps up and he feels he must call me and come home immediately) and homeschool him for his last two periods- PE and Health. I have tried very hard to not have to homeschool my kids, and I know that sounds terrible, but they require so much from me when they are home that to imagine having to get knowledge into them as well as all the other battles we have daily is just too much. But apparently this approach may help Aidan, so I have to give it a go.


Ella’s school team decided she would benefit from a 504 Plan. She has struggled every year since Kindergarten, but has been blessed with incredible teachers who led her through the year with unofficial accommodations. This year she needs formal help. Hopefully she’ll start to soar.


Ben is terrified of his IV treatment, and that darn picc line. I can’t blame him. But we’re hopeful that this treatment will beat back the beast of Anxiety and help his body find healing, which he desperately needs.


My goal every day is to get each anxious child to school. Then shower, and possibly have time for breakfast. Then go pick up Jonah for his treatment. That takes a few hours. The plan was to bring Jonah back to school after his treatment, but so far he has felt too sick to do that. We get home from Jonah’s treatment just in time to go pick up Aidan from school. We get home, do some school work for PE and Health. Then Ella gets home, and then we have after school activities for Ella and Ben, and some tutors thrown in there a few days just for fun. Somehow, laundry needs to get done, groceries need to get bought, and food needs to be made. Homework needs to be done, dogs need caring for, and kids need constant TLC to avoid all the minefields their anxiety dishes out. I’m not complaining; I’ve got it down to a science and it’s all under control. But the whole thing is just absurd. Whose life is like this? Absurd.


It can pretty hard to be the Mama, when your kids are suffering in so many ways all at the same time. To maintain my calm spirit and loving heart takes tons of energy. Most of the time I don’t know if what I’m saying is actually true. I listen to my gut, and tell the kids what I feel. I feel that this treatment will improve the boys’ lives, at least to some degree. I know Aidan’s anxiety seems completely overwhelming right now, but soon we’ll look back and see how much he’s overcome. I’ll giggle as I reminisce about the time I had to give in and homeschool a kiddo. I believe everything is going to turn out just fine, after we get through this very very rough patch. But I don’t know any of that for certain. So to lead my sweet clan through the darkness of their anxiety while doing my best to listen to my gut and reassure everyone that we will be fine…it takes a lot of faith. Faith that my intuition is right. Faith that there is a Plan and we WILL be fine. Faith that we’re going through all of this so that I learn even more about crazy things I never thought I’d want to know- like who knew what the heck solar retinopathy was until a week ago??- so that someday I can help other people. Faith.


I wake up at 2:22 am every single night. I lie in bed, thinking, worrying, contemplating, and counting my blessings. Today when I was jolted awake, I thought about how I am so grateful for wonderful parents. Parents who all help in their own ways. My parents came to spend a few days this week, doing our laundry, cooking our dinners, running our errands and picking up kids when I was at treatment with Jonah. They came to cheer us on during this difficult journey; they came to give us a “boost,” as Dad says. Boy, did we need a boost. Because I knew that our laundry was being done and our dinner was being fixed by someone other than me, I had the time, energy and patience to do homework with Ella and Aidan—without getting frustrated. I had time, energy and patience to get Ella and Aidan through their shower routines—without getting frustrated. When you are given the gift of time, energy and patience, when you are normally exceedingly short on all, it feels like a miracle. A beautiful, lovely miracle.


Instead of “finding myself” this school year, I’m intensely concentrating on each of my kids’ needs, trying to soak up all the information possible to make sure they are all ok. Everyone says I need to make sure I take care of myself. Put the oxygen mask on myself before tending to others. Hmm, not gonna happen. My Mama soul is a teensy bit shredded and numb. But if we can rally through the next couple months, maybe our family will find new health, peace, and calm. There’s always next year to “find myself.”

Tuesday, September 19, 2017

Giraffe Fight

Sometimes, our morning routine resembles a giraffe fight. Have you seen giraffes fighting? I know I should be sad that there is strife even in the world of giraffes, but instead all I can do is laugh until my sides hurt. It’s hysterical. You have to Google it. The giraffes sidle up to each other and then WHAP each other with their long, gangly necks. Whap. Whap. Whap. It’s awkward and unexpected and pretty comical.

This is how our mornings are sometimes: awkward, unexpected, and in hindsight, comical.    

Our school year has started off the best of any school year so far in our entire school history. I’m in shock. We have three schools our four kids attend this year, so there’s more juggling on my part. But at each school, there is at least one person who completely has my kiddo’s back. At least one person who is supportive, on board, understanding of my children’s disabilities, and totally wonderful. I’m so used to having to go in, guns blazing, to get my children help at school—this is quite an unexpected gift.

That’s not to say our year is easy sailing, by any means. There have already been sick kids staying home, kids who can’t get to school because of their Anxiety, grades tanking, things forgotten, homework not turned in, more Anxiety, social issues…BUT. This crazy life of mine has made me so cognizant and grateful for all the little things that are going right. I take nothing for granted.

Aidan has had a few tough days. One day, his Anxiety was more than he could handle. I tried my Mama Magic to maneuver him through the morning and tried my best to calm his school fears and get him out the door. You have to be very careful with Aidan, because he is so super sensitive, and if you raise your voice or he perceives that you're mad at him, he shuts down and won’t come out of his shell at all. So you have to maintain your cool at ALL times, which is nearly impossible when you’re in a giraffe fight and that giant neck is coming at you, whapping you when you least expect it. This form of warfare is subtle, but effective.

So I did my very best to have a calm, supportive voice as I tried to get Aidan to the bus stop, although inside I just wanted to YELL at the utter absurdity of all of this. I am envious of families who don’t walk a minefield just trying to get their kids to the bus stop every day. Who don’t wake in turmoil, pretending that everything is fine, hoping everything is fine, wondering if this is the day Anxiety will be back.

I rubbed my boy's back as he lay on the floor, feeling the physical and mental anguish that his Anxiety was churning up inside him. We tried to get to the bottom of his fears so we could sort them out. My little boy was gone, and in his place was that giraffe, whapping his neck all around, lashing out, shutting down, full of insecurities and overwhelm.

I could see I was losing this battle. The bus came and went. My heart sank. This wasn’t my first rodeo; I know this kind of morning all too well. This wasn’t the first day Aidan had had too much anxiety to make it to school this short year, so I got in touch with the teacher who is 100% on Aidan’s side. After some emailing and a phone call, we came up with a plan.          

I calmly and lovingly presented the plan to Aidan. When he felt calm enough, we would drive to school and I would drop him off. His wonderful, incredible Special Ed teacher said she would drop everything to be with Aidan as long as he needed her. If for some reason she was unavailable, we had a back up person to tag team with Aidan. I told him he didn’t need to think about all his worries, he just had to get his body to school. Even just for a short time. Just get there, talk with his teacher- because she had some ideas for how to help him feel better- and then if he needed to, I could pick him up and he could come home.           

Aidan made a counter offer: he would like to stay home for a little while until his red, puffy face went back to normal. And he requested a decaf, almond milk, no whip, mocha frappucino from Starbucks on our way to school. This is his most special treat. 

So here’s an example of when parenting books fail the special needs parent. I know that no parenting expert on Earth would say I should get my kid a special drink after a morning like this. I would be rewarding his misbehavior. He was being bad and he should be punished, not rewarded. But if you parent a child who has special needs, and you know his brain is on fire, which is causing all the anxiety in the first place, you know in your heart of hearts that your child is so good. He is not misbehaving. He is not manipulating you. He is doing the best he can, while struggling with invisible disabilities and illnesses that others can’t see and are too quick to judge. This kid. My boy is sensitive, and beautiful, and perfect, and so many times on Giraffe Mornings, I want to dissolve in a puddle of tears alongside my little giraffe, because I see that life is too much to handle. I get it.

I knew that if I promised Aidan a special Starbucks drink, not only would it be something for him to look forward to on the drive to school, it would momentarily take his mind off his worries, because he’d be distracted. And the best part: he would agree to get into the van. You have to understand, in all the years up until now, if we had an Anxiety Day, my kiddo never made it into the school building. He refused to get on the bus, and it was too dangerous to try to drive him to school myself because of how out of control he was. The fact that he was willing to show up to school, even for a short time, is a monumental improvement and worth all the celebratory mocha frapps in the Universe.

So I agreed to my son’s terms. He calmed down and got his face back to normal, we got a mocha frapp, and we walked into school together. Aidan wanted me to stay with him, but I told him I couldn’t but that his teacher would be with him until he was ready to move on with the day.

I was so proud of him. It doesn’t matter that three hours later, he called from the nurse’s office to come home. The point is he got his body to school on an Anxiety Day!!!! Woot woot!! This kid amazes me. I was so grateful to his Special Ed teacher, because Aidan asked to come home pretty soon after he arrived at school. But his teacher was able to help him work through his Anxiety a bit, and he was able to stay longer. They went to talk to the PE teachers, who Aidan is struggling with. They made it to math class. Then, Aidan asked to come home again. His wise, intuitive teacher realized that this had been a MAJOR accomplishment for Aidan, and that she shouldn’t push him farther than he could handle, so she said Aidan could call me and come home.

Victory. Success. Was the day perfect by “normal-people” standards? Far from it. But for us, it was a tough, but successful, day. I was exhausted and emotional, but we had all worked together as a team to help Aidan get the best possible outcome for his day. After I dropped him off at school that late morning, I felt stupid for crying on my way home. But then I realized what a stressful, challenging, overwhelming task it is to take on a giraffe fight, and come out winning. It takes all my strength, all my creativity, all my fortitude and patience and love to get through a morning like that successfully. It’s completely gut-wrenching and exhausting. So I gave myself permission to feel emotional. I had just fought a giraffe, and my son and I had both come out winners.

Every morning that I walk my children to the bus stop, and they actually GET ON a bus, I rejoice. I rejoice that our day is going the way childhood days are supposed to. I rejoice that my children are successfully handling the things that typical kids do. I rejoice that there was no awkward, insane giraffe fight that morning. Sometimes finding the gifts in this dark journey is tough. But I never know when there will be an Anxiety Day, and so I never take the little victories for granted, and that is a gift.                                      

Wednesday, September 6, 2017

Compassion Fatigue



“How was your summer?” everyone asks. I don’t even have words. I legitimately don’t know how to answer that question. So I say, “It was fine, how was yours?” But our summer was anything but fine. The farthest thing from fine ever.


This summer, Ben and Jonah began aggressive treatment for Lyme, PANDAS, and every bacteria and infection in between. We knew it would be tough, but we were up for the challenge. Until that challenge chewed us up and demolished us and spit us out, broken and scarred.


The past three months have probably been the most anxious, stressful, and terrifying months of my whole life. The boys did not react well to treatment. Their bodies could not detox, so they were effectively being poisoned from all the things we were killing off with medications. Their brains became super inflamed and their behavior and emotional problems escalated to a level we have never seen. I called the doctor a few times a week, asking if this was really the treatment we should be doing. Was this normal? The doctor kept reassuring me to stay the course, this was to be expected, things would improve. He didn’t know when, but they were sure to improve.


Turns out, the doctor was wrong. Things just got worse. The boys raged for hours and hours every day, incapable of being calm because there was a wild fire in their brains. Their OCD skyrocketed, and they would get stuck in a mental loop with thoughts they couldn’t get rid of. They said they couldn’t continue to live like this. They said it was too hard. They begged me to make it all stop.


I would rub their backs as they lay on the floor, writhing in agony because their bodies were betraying them, and I would take their tear-stained cheeks in my hands and look into their eyes full of pupils and tell them everything would be ok. We would get through this. I was here, I’m always here, I will take care of them. I will help them.


I held in my own tears as my heart broke, day after day, watching my boys struggle like never before. I couldn’t believe this was our life. We couldn’t do anything “summery,” like take a vacation, visit grandparents, go to the beach or the pool. We had to stay home. We had to be in an environment where I could contain the Crazy. I felt badly for Ella and Aidan, because on especially bad days, they couldn’t have friends over, and I couldn’t take them anywhere. I had to be on watch constantly to make sure nothing terrible happened to the boys while they went through their own private hell. We were all being held hostage by the Crazy. We couldn’t keep up with weeding the garden, or cleaning the house, or seeing friends. Many weeks it was a miracle if I could get to the grocery store. There were many times when we thought we would have to call 911 because we weren’t sure if we could deal with this level of Crazy. But we knew that if the boys were taken to a hospital, our treatment plan would not be followed, our parenting choices would possibly be questioned, and the boys would be pumped full of psychotropic meds when what they were really struggling with was physical illness, not a mental one.


How did we get here? How could this possibly be our life?


One day we were supposed to have family over. One of my boys spent the entire morning raging inside his mental prison cell of OCD. He was rolling on the floor for hours, screaming until the veins in his neck bulged, crying, swearing, saying he was going to kill himself. All I could do was be with him. Assure him that we would be ok. I didn’t know how, but I would fix this for him. We couldn’t prepare for our guests. We couldn’t clean, make the house pretty and cozy, come up with and set out appetizers or special drinks. We were living minute to minute in a type of insanity we had never experienced before.


When our family arrived, my boy pulled himself together. He behaved pretty normally. We ate. We talked. But inside I was a shell of myself, completely depleted by bearing witness to my sons’ endless, desperate struggles. I tried to pretend everything was fine and it was just a normal weekend and we were having a lazy afternoon with guests. But I was wrecked. We had no idea how to even tell people what was going on, because there are no words to describe it, and sometimes people don’t believe it when we do let them into this hellish horror. When I talk about the Crazy, I do it with a calm voice, matter of factly. There is no way anyone else can even grasp the level of terror that living with PANDAS can create, unless it’s your life too. It’s like having grown up in Africa: no one else can truly understand what it was like unless they lived it. I can tell stories about it, show pictures, but if you weren’t there you’ll never be able to grasp what it felt like, smelled like, looked like. It’s not a criticism, it’s just a fact.


Having to deal with the Crazy that is PANDAS is similar to living with abuse, or addiction, I would imagine. You try your best to function, to hide what the reality is. You try to stay strong and not let on how bad the Crazy actually is. You do your best to hide the wounds, the weakness, in this case the rages. But the stress eats away at your body, mind, and soul, leaving in its wake a mountain of PTSD, a burnt out body, ferocious anxiety and fatigue. You cannot even believe you are in this place; how did things get to this point? You are a good person, a good parent. How could this possibly be happening to your family?


A friend and I were talking about “compassion fatigue” the other day. Wikipedia states that “Sufferers can exhibit several symptoms including hopelessness, a decrease in experiences of pleasure, constant stress and anxiety, sleeplessness or nightmares, and a pervasive negative attitude.” Yes. All of this. Times a bazillion.


Compassion fatigue. What a perfect term. Friends and even family can find caring about someone with a chronic illness to be too much, so they may distance themselves from the sick person. But as a Mama of four sickies, I don’t have that option.


The extreme emotional toll this stressful summer took on me just completely undid my heart. I was so fragile, anything could make me break. When our friends, Ella’s dance teachers, gave me a heads up about the class schedule this fall just a bit before it was made public so that I could figure out our therapy schedule, I broke down in the middle of the dance studio. I was so touched by their kindness and compassion towards our family. When friends texted to see how I was doing, it brought grateful tears to my eyes. When my parents emailed their support, sometimes several times a day, or my brother called to chat, I felt my wall of strength crumble into vulnerability. This Crazy. It changes you.


As the stress rolled over me every minute of every day this summer, I put on my goggles to see through the thick fog of fatigue that enveloped me. I tried my best to muscle up my compassion, empathy, and hope for my boys, because I could see they had lost theirs.

Finally, I called our doctor and informed him we would not be continuing with this particular treatment for my sons. We were going off all the meds he had prescribed and together we would come up with a new plan, because I refused to watch my children writhe on the floor with suicidal OCD one more minute. And how would they possibly go to school in just a few short weeks? Enough. I had given this line of treatment a chance, and it ended up to be the most horrifying thing we’ve ever gone through. Enough.


The doctor agreed. As doctors do when faced with Mama Warrior who has her own opinions about the health of her children. We got off all the meds the boys had been taking, and started a new regimen, very very slowly and gently. In the meantime, I took the boys to see another doctor who has a reputation of being “cutting edge” when it comes to treating Lyme and PANDAS. He agreed that since the boys did not do well with all the pills they had taken over the summer that something else needs to be done. So we will be trying an IV treatment in a few weeks that boosts the immune system and helps the body fight off all of its attackers. The treatment is called Ozone Therapy, and has been used in Germany for decades. More and more, I wish I lived in Germany. I keep hearing about all the amazing advances they have made in treating the illnesses our family struggles with. Maybe I need to get us all new passports.


IV treatment may seem radical, but at this point, we’re desperate. Pills don’t work to quell the boys’ symptoms. Although they are doing much better since going off the medications of the summer, they still have flares where rages take over like a freight train and are impossible to stop. The boys have just a few short years before they will potentially be out in the world on their own, so the clock for healing is ticking. If Ozone Therapy does not work, we have a Plan B, which is IVIG- another IV treatment. My sons are furious that they have to go through IV treatments, as any teenager would be. But then we talk about how much they are suffering, how sick they are, how we cannot contain their symptoms at a manageable level and the entire family is suffering because of it…and this is just what we have to do at this point. There are not a lot of options left, and the boys are very ill.


I don’t know what the future holds. But I do know that even though I’m wading through a sea of compassion fatigue that makes me want to quit fighting, I will never stop battling these illnesses until my sweet babies are all healthy and happy. I will stand with them as they suffer, because it’s all I can do. Even when I want to quit.


This summer has left me shaken and haggard. I feel like I’ve aged 20 years in three short months. So I’m trying to rebuild my own health and buoy my soul. I try to get to yoga- the restorative, slow kind for people like me who are not exactly yogis by nature. I cut up lemon and put it in my water every day. I walk the dogs and revel in the chill in the air that Fall is bringing. I try to eat clean, nutritious foods. I try to do something every day that makes my soul sing. Sometimes I’m better at all this than others, but every day is a new beginning and I just keep trying.


So that’s how my summer was. I don’t have a short answer for, “How was your summer?” Someday I hope to be the Mama whose response is, “It was so great, we did so many fun things, the kids are fabulous, we’re all just fantastic!” And not think instead about compassion fatigue and PTSD and sleepless nights. Someday.