Wednesday, December 13, 2017
Once upon a time, I was terrified of having teenaged children. Before I had kids and when mine were little, I thought, “What in the world would I do with teenagers?? They’re so scary! They’re irritable, moody, I’m terrible at technology so I won’t be able to keep up with them, I don’t know anything about their world…I don’t know what I’ll do with teenagers.” I want to put all those Mama’s-of-youngsters minds at ease, because now I know that parenting through the teenaged years is one of the most enjoyable phases ever.
I wish I could go back and tell my younger Mama self not to be so worried. Everything is fine. Is it easy? Not usually. Is it fun? Sometimes. Is it challenging? Absolutely. But wow, is it amazing. Here’s why.
I always knew I was great at dealing with babies, toddlers, even school-aged kids. But my own experience as a teen was pretty rotten, so teenagers have always scared me. I know exactly what to do with younger kids. I can intuitively read them, I know their needs and how to provide for those needs. I worried that once my children turned into teenagers, they would somehow be like aliens from another planet and I would have no way to identify with or understand them. I realize this is an insane, unfounded fear, but that’s the nature of anxiety- it’s irrational.
I now have two 15 1/2-year-olds, so we’ve done the teenaged thing for a little while. And I can honestly say it’s as remarkable an experience to parent these teens as it was to parent my toddlers. Just like in the toddler phase, which was one of my favorites, every day for my teens brings new adventures, new insights, new growth in so many ways. Sure, new struggles are part of that as they learn to navigate the world in a more independent way, but it’s a gift to be able to watch my children use the sum total of everything we’ve ever learned together in order to be able to thrive in this new world of being a teen.
As I watch my teens, I’ve had an epiphany: I see how every day we’ve spent together, all the work Alex and I have put in, all the love and time and attention and understanding and compassion and empathy, all of that has led to today. All of that has brought us to where my boys are in life right now. Yes, we’ve had unique struggles because of our family’s special needs. But regardless, my kids age just like everyone else’s, and they turn into teenagers just like everyone else’s, and my hope for them is that they become happy, healthy adults, just like every other parent hopes for their kids.
I’ve had the rare opportunity to spend lots of one-on-one time with my teenagers these past few months. Because they have been getting a 5-week course of intense, daily treatment for their Lyme and PANDAS, I have been able to spend time with them that normally we wouldn’t get. The boys’ treatment was staggered, so there was a two-week overlap between them. The other three weeks of each boy’s treatment gave us lots of alone time. While it was overwhelming and scary and tiring to go through the treatment every day, not knowing what our outcome would be, I tried to focus on the little gift of time with my boys that this treatment was giving us.
Every day to and from treatment, the boy I traveled with would ask to listen to HIS music. I always agreed, because I want them to know I’m interested in their interests, I support them and like who they are, and I want to know things about them like what kind of music they like. It was interesting. Some of the music I had never heard of before. Some was pretty loud and annoying, but I took deep breaths and concentrated on how fascinating it was to be entrenched in my son’s world at that moment. I consciously recognized the beauty in being forced to get to know my boys a little bit better.
I have always loved how different my twins are. They are each unique, incredible souls, with different personalities and tastes. It was really fun to ride to and from treatment, first with Jonah for three weeks, then both boys for two weeks, then Ben for three weeks. It was fun to hang out with them. They were such troopers, dealing their picc lines and getting IV’s every single day for five weeks and having tutors every day. They showed true courage and resilience. They trusted that if I said this treatment could help them, that it was worth doing. They amaze me.
Sometimes on our treatment drives, the boys would talk to me. They usually tell me a lot about what’s going on in their lives, so this wasn’t unusual, but it was nice to have the time to sit and chat. They talked about all kinds of things, and I gave them space and listened, loving that they let me in to their worlds. I realized that this is why our teenaged years are going so differently than I expected them to. It’s because this is how I have always parented, and we have built a strong foundation. I try to emulate how my parents have always treated me: with deep love, respect, support, empathy, and compassion. When I talk with my Mom and Dad, I feel like they think I’m interesting and beautiful and amazing and talented. I always wanted my children to know that’s how I think of them. I cherish every miniscule detail about them, and I think they are the most brilliant, incredible, fascinating, stunning people on the planet. I knew that if they felt heard and loved at home through all the days of their childhood, then while I can’t control how the world treats them as they gain more independence, at least I know that I’ve shown them complete, honest, true love. And that is the most important thing any parent can do for their kids.
So to all those parents out there, parenting little people right now, worrying about the teen years that are looming, take a deep breath. It’s really not bad at all. The struggles are different, of course, but it is so beautiful to see your child blossom into their own person. It is so fun to see who they become. It is humbling to realize that every day that I have parented them has led to today, and today my teens are truly remarkable humans. They’re fun, witty, smart, politically savvy, kind, compassionate people that I enjoy spending time with.
When you’re in the thick of diapers and spit up, potty training and time outs, kindergarten and play dates, braces and anxiety, it’s very difficult to see the big picture. It’s hard to see that ultimately, you’re helping shape humans into who they will eventually become in the world. It’s a big responsibility, but one I wouldn’t trade for anything in the world. I have been pleasantly surprised by our teen years so far. It’s a privilege to see the awesome people that all this parenting has to helped develop.
Friday, December 8, 2017
The past couple of months have seemed like an eternity. I wasn’t sure Alex and I would survive the stress. Seriously, we both came within millimeters of a breakdown. Between getting Ben and Jonah to their IV appointments every day, picking Aidan up early every day to homeschool him for two classes, Ella’s ongoing school issues, and everything else life decided to throw at us, it’s seriously a miracle that we seem to be coming out the other side of this darkness.
Ben and Jonah have been getting IV ozone, glutathione, and Meyers cocktails every day. They have each done five weeks. The sessions were staggered, so when Jonah finished, Ben still had three weeks to go. I’ve been commuting to the IV clinic like it’s my job. Every day. For months. The boys had to get picc lines to make their IV treatment easier. This is serious business, fraught with a lot of unknown. As a parent, when you are putting your children through a lot of stress and drama, and there is a lot of unknown about the outcome, you feel a lot of emotions. I was sad that my boys didn’t feel well as part of the treatment. I was worried they would get infections from their picc lines, or the lines would fall out somehow and there would be blood everywhere and I’d have to figure out how to deal with it. I had to flush those picc lines each Saturday and Sunday, holding my breath and praying nothing would go wrong. I had to advocate with our incredible high school to get the boys homebound tutoring while they did their treatment. But my biggest, scariest fear was that we would do all this and nothing would happen. We wouldn’t see any results, after all this time, money, sweat, blood and tears. That was my very biggest fear, looming over my heart every single day.
You may wonder why we would go to such lengths to find our boys renewed health. You might think we’re insane for taking on such a monumental task. Insurance doesn’t cover most of this treatment, so we’ve also taken on a lot of debt. You may think we’re crazy.
But let me tell you, when you spend a summer watching your children disintegrate before your very eyes, tangled deeper and deeper inside their illness, you will do anything to save them from that darkness. When you look into your husband’s eyes across your son who is raging on the floor, and see your own desperation and raw fear mirrored there, you realize you need to move heaven and earth to figure out how to fix your boy. When you seriously contemplate calling 911, or hospitalizing your child, repeatedly, because you don’t know how you can possibly handle what is happening on your own, you know that if you find a glimmer of hope, you will jump at it. When you think you will most likely have to place your children in residential care because there just is no way they can live with you, you know that if the possibility of help comes your way, you will grab it, no questions asked. You will spend whatever money it takes, you will drive whatever distance, you will give whatever time is necessary, if only you can help your children lead a healthy and happy life. If you have walked in our shoes, and seen this darkness firsthand, you would completely understand why we have made the decisions we have.
The effects of this IV treatment have been subtle, yet powerful. The medicine makes you feel sick a lot. Brain fog, nausea, fatigue, muscle aches. But then we started to notice other small peeks of hope. It started with Jonah, who began treatment first. One day he realized his tics had stopped! Then we noticed that he wasn’t overwhelmed by sensory stimuli the way he used to be. He became less anxious. There was a lightness, a relaxation about him. We wondered if it was our imagination. We wondered if these positive gains would be fleeting, like so many other interventions we’ve tried.
Ben began treatment three weeks after Jonah. He has felt more sick than Jonah did. But then we started noticing differences in him also. One day we realized that Ben was getting up when his alarm rang! This has never, ever happened. He was always just too fatigued. Then his rages started decreasing. Some of his tics went away. Like Jesus’ mother, Mary, I “held these things and pondered them in my heart.” (I just love that phrase) I was afraid to hope too much. I still worried that I had steered this family ship into uncharted waters, and if nothing happened, it would be my fault that we had wasted so much time and money.
Every day, I watched my boys intently, secretly. Have you read the children's book, “Leo, The Late Bloomer?” I love how Leo’s father pretends not to watch for signs of his son blooming, but there he is, in every picture, hiding with eyes wide open—watching for signs of the Big Bloom. I was watching for the Big Bloom too, holding my breath.
Then Jonah started brushing his teeth-- without me begging. He showered every day. After he got his picc line out, he popped out of his bedroom each morning with bright eyes, ready for school. Although he had been worried during his treatment that he would not be able to participate in his choir concert because he wasn't prepared, he worked so hard and in a week and a half learned all the music. He was excited and proud to be a part of a beautiful concert.
One day, Ben and Aidan were home alone for a couple hours. When we got home, Ben announced he had cleaned the basement. Picture my jaw on the floor. He hadn’t just shuffled the mess into a corner; he had put all the toys away. He had even VACUUMED.
We went to my brother’s for Thanksgiving. It was a perfect day, filled with amazing food and beautiful family. Ben and Jonah went into the basement to play with the younger kids. They have never done that. They played games with the whole family. ALL WITHOUT GETTING OVERWHELMED.
We used to wake with a jolt on weekends, with panic in our hearts, because of the rages that had already begun while Alex and I had the nerve to sleep past 5:30. There have been no weekend morning rages since starting ozone. Ben and Jonah have gone to activities together without arguing, like church youth group and rehearsals for the holiday play they are both participating in. The other night, Ben brought Jonah his dinner plate, just to be nice. And then went back to get him a fork. The boys volunteered to help Alex put up Christmas decorations outside for the first time ever. They have brought in groceries from the van without me asking.
I’m just completely floored. I’m astonished. I’m grateful and hopeful and humbled. And mind-blown.
I know these things sound mundane and typical. But in our house, each of these small things is a complete, astounding, astonishing MIRACLE. These actions represent things that Alex and I always hoped for our boys, but things that never happened. It isn’t that the boys didn’t want to do all of these things before; they just weren’t able to. Their inflamed brains were just not capable of handling the sensory input, motor planning, emotional regulating component of all of these things.
As each of these incredible improvements happened, I tried to contain my excitement so that I wouldn’t overwhelm the boys and make them creep back into darkness. But I was just astonished at what I was seeing. For instance, the boys adore their cousins and younger siblings, but were usually just too overwhelmed by life to interact much with them. The younger kids in our family are full of life and noise and excitement: too much for Ben and Jonah. They would get overwhelmed easily. At Thanksgiving, for the boys to voluntarily go play with their younger siblings and cousins was a total miracle. And to listen to them all laughing and having fun, that was a gift I will cherish forever. For the boys to be able to play a game with the younger kids, and not get overwhelmed and ragey, that was another miracle. For Ben to have the energy to clean and vacuum the basement…astonishing. I cannot convey to you the incredible phenomenon that these small events meant to me. If your family naturally, easily does these things, you wouldn’t understand what a struggle every moment of life is for our family. Or what a gift it is when these things are no longer a struggle.
When we began ozone, all I wanted was for the boys to be able to handle life a little bit better. For them to be able to get through a weekend without it destroying them. For there to be fewer rages. For there to be more resilience for life’s frustrations. I wanted these things, but I didn’t expect them, because I’ve learned to never get my hopes up. When you get your hopes up, all that can happen is for them to be crushed. I’m a naturally hopeful person, so it’s hard to temper my enthusiasm. When Jonah realized on the way to ozone one day that he wasn’t ticcing anymore, I wanted to jump up and down in my seat and scream for joy!! But I knew that would overwhelm him, so I squeezed Jonah’s shoulder and told him happily how overjoyed I was that his body was more comfortable. Some of his tics caused him a lot of pain, so to know that my boy was feeling better was a huge gift.
Sometimes you have to take a leap of faith and know that even if something sounds totally crazy, it may give you light. It may bring changes you couldn’t have even imagined. Sometimes you have to just follow your heart and jump, not knowing exactly where you’ll land, hoping that it’ll be a better spot than you started from. I don’t know if the effects of ozone will be permanent, or short-lived. But what I do know is that my boys’ health has improved. Right now, they are calmer and happier and able to engage in life in a way they never have before. Residential placement is so far from our minds, it seems like a lifetime ago that we worried we wouldn’t be able to parent our own children.
Life is never perfect, and ozone hasn’t perfected anything for us. But it has given us a glimpse of how life is supposed to be. It has given us the gift of our boys- able to live life in a way that hasn’t been possible up until now. I would pay whatever it cost, I would drive as many miles as necessary, I would spend years of sleepless nights worrying about the outcome, if it gave my children a better life. I have no regrets about this decision we made, many weeks ago, in a time of suffocating darkness. I see the light gleaming at the end of this long tunnel. Whatever happens, I’m grateful for this time of discovering new possibilities, for getting to watch my boys live life in a way most people take for granted. I think we're in the middle of the Big Bloom.
Saturday, October 14, 2017
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.”