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Friday, December 8, 2017

The Big Bloom

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.


Suzanne Crager said...

Carrie, your mother suggested I read your blog today. She and I have a connection over the fact that our daughters' lives are filled with hurdles. I've read your blog before, and am full of admiration for your finding this way to help you cope with the challenges you have been facing. I am filled with respect for your handing of the 'hand' life has 'dealt' you. Please know that I am touched, and so very pleased for your entire family, that there has been this positive change brought about initially by your bravery in forging ahead with this treatment. Thank you for sharing your experiences. This also takes a level of bravery many people lack. You have touched me deeply.

Joyful Chaos times 4 said...

Suzanne, thank you so much for your kind, encouraging words. It is difficult and often lonely to be on this path, when we don’t know what the future will hold, and it means more than you can imagine when people reach out to support us. Thank you for taking the time to do that, it means the world. Best wishes to your family!