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Thursday, October 4, 2018

Seeds of Surrender

Whew, I had to take a minute to catch my breath, and back away from the brink of a nervous breakdown. Last winter and spring kicked my butt. Kids were in crisis, I was driving 4-6 hours every weekday to bring kids where they all needed to be because of said crises, I had to quit the best job in the world, my health suffered because of the extreme stress I was under...whew.

But I’m back! The summer gave us some reprieve from crises. The kids had some down time, some time to heal and relax. Things smoothed out. I think it was our best summer yet. Since getting IV Ozone treatment last fall, Ben and Jonah’s health has greatly improved. We haven’t had a rage in months. Rages used to happen multiple times a DAY. EVERY day. Now, it’s been months since we’ve had a full-blown rage. I live with PTSD because of all the years of rages, so I subconsciously wait for the next rage to hit, but so far so good. That in and of itself is the most monumental improvement— more than I could ever wish for or ever expected. The rages were what fueled my search to find the kids help, all those years. If you haven’t lived with rages, there’s just no way to explain the harm they do to an entire family. On a Facebook post from a fellow PANDAS parent, a mom used the words “horrific and surreal” to describe a PANDAS flare and the ensuing rages that came with it. There’s no better way to describe this illness. Horrific. Surreal. At times I can’t even believe this is my life. 

But things have a way of ebbing and flowing, waxing and waning. Light comes back to our days. We’re in a light spot right now. We still have hiccups occasionally. Flares come and go and surprise us and challenge us. But overall, everyone is doing well. 

Which makes me very uncomfortable. 

I’m used to adrenaline pumping, all day, all night. I’m used to feeling the fight or flight response many many times each day. I’m used to stress. Constant, intense, chronic stress. So when it isn’t there, I feel uncomfortable. And I try to fill that hole that stress left with something else. I try to stay ultra-busy. I go back to my part time job. I take on responsibilities I don’t need to take on. I overdo life. And then I crash. 

My body has informed me that I am not able to do all the things I used to do, without consequence. My sweet body put her foot down these past few months and said, “Nope. We’re not going to live this way.” I tried to argue with her. I tried to ignore her and convince her that I can still do it all. I can still OVERdo it all, I should say. That I can give and give and give and I really don’t need anything for myself, because life is supposed to be hard and challenging and never easy and comfortable. 

When I ignored my body because my children were in crisis, my body silently revolted. My thyroid went on strike and my Hashimoto’s flared. My Epstein Barr levels soared, all of which sent me into a tailspin of extreme fatigue. Fatigue completely freaks me out, because I get so scared that this will be the time when I won’t bounce back. This will be the time when I’m incapacitated forever. This will be the time I pushed my body too far.

My body has been giving me signals for the past decade, but either I didn’t recognize the signals, or the doctors I had at the time didn’t. A couple years ago, my gynecologist met me in her office with a long face, and said that if I wanted to have more babies, she would feel sad for me. Because my ovaries were done being ovarian. They had retired. They were on strike. “Four preemies is ENOUGH!” They said.

I went to get my hormones from Walgreens after my doctor handed me that news, and the pharmacist (who knows me so well because I pick up meds almost every single day for someone in the family) remarked that this was a new medication for me, and asked if I had any questions. I said no, no questions. I told my pharmacist friend that I had just found out that my ovaries were dead, so you know, I was going home to have an Ovarian Retirement Party with wine and ice cream. We both laughed. Because really? Really, whose ovaries just pass out at 41? Who goes into menopause at 39? Who has FOUR preemies? Who gets Lyme, Erlichia, Anaplasmosis, Hashimotos, Epstein Barr, scoliosis and more? Whose got four kids with special needs? Really, who? 

Well, this girl I guess. You just have to see the funny.

A friend recently told me I shouldn’t say my ovaries are “dead.” But my ovaries and I have a great relationship, and this is our inside joke. I am so grateful to my body for giving me my four beautiful children. I am so proud that my ovaries hung on, by some miracle, to make me a mama. I’m totally fine with being in Ovarian Retirement, and when I say my ovaries are dead, it’s a term of endearment. They know I love them. We agree that this is the craziest life, and my ovaries and I think it’s hilarious that I have gone through everything I have, and I’m still here, with the big, crazy, beautiful life I have.

Luckily now I have a team of doctors who know what to watch for when my body goes on the fritz. They know how to pull me back. I remember twice this past summer when I was struck with awe because I realized that my body felt comfortable. Two times, I didn’t have any pain anywhere. Not inside, or outside. Not in my muscles or joints or intestines or brain, not anywhere! One of these times, Alex and I were driving together and I said out loud how weird it was because at that one brief moment, my body was comfortable! That never happens when you have chronic pain. The pain-free state lasted only moments, but it was amazing and I was grateful. 

One of my soul sistas told me a few months ago that she was focusing on Surrender. I said I have a hard time with that word. She explained that she is not surrendering, as in giving up the fight and putting a stop to advocating for her family, but that she is surrendering to the place she is in life. She is not fighting what life is bringing her right now. She is trying to be ok with the way life is, even though it’s not what she expected and not what she wants in many ways. 

My soul sista is one of the wisest, most intuitive and inspirational people I know, so I knew that she was telling me something I needed to hear at that moment, even if the “why” or “how” of it didn’t make sense to me then. I made a mental note to explore Surrender.

I sat with Surrender for a few months. It kept popping back into my heart. I sat with Surrender, tasting the feeling of it in my mouth, and pulling it around my shoulders like a warm blanket. I tried Surrender on. It slowly started making sense to me. 

Recently, I had a day full of physical pain. Most of my days are full of pain, but this day was particularly intense. Fatigue and pain gripped me. Normally I don’t realize it, but I fight my body. I panic. I push against the exhaustion, I grit my teeth against the pain. I try to shove it down and do what I need to do and ignore the pain. I worry that if I recognize the pain and fatigue, I won’t be able to go on. I will have to listen to it and deal with it and I won’t be able to do all the things I want and need to do in my busy life full of beautiful kids. 

The panic crept in. I tried to push away the pain in my body. Then I heard, “surrender...”

I don’t know how to surrender, I argued. What does that even mean- surrender??


I thought Fine. I’d give it a try. So I took a deep breath. I acknowledged my pain and fatigue. I sat in the car on my way to pick up a boy from a thing and I fully felt my pain. I leaned into it and breathed. I recognized the anguish my body was in. I thought it would break me. But instead, something beautiful happened.

I was shocked. It felt like my breath wrapped around the pain, and something enveloped the entire ‘me.’ I felt like I was fully unified, totally one, perfectly together. The pain and my body were coexisting, not fighting. The pain wasn’t an entity of its own, it was just part of me that I could work within. The pain didn’t stop me from doing what I needed to do. By leaning into it, recognizing it, and surrendering to it, I was able to keep moving forward. I was able to keep picking up and dropping off kiddos at activities, walk the dogs, make dinner, yell at kids about showering...all the things I had to do. 

I surrendered and somehow it made me stronger. 

I have been pondering how we always hear what we need to, at exactly the right time. Things come into our lives at the perfect time, even if we can’t see the meaning or perfection. My soul sista planted the seed of Surrender for me months ago, and I knew I was meant to digest it a bit in order for it to make sense to me. Isn’t it wonderful that teachers are put in our paths at the perfect time?

I’m practicing Surrender. I usually forget about it and try to muscle through the pain, exhaustion, fear about rages returning, anxiety about kids’ flares...It is not natural for me to Surrender. But sometimes I remember to work on it, and when I do, I feel an ease. Not that life becomes easy, but that I am able to function with more ease, more comfort, within the challenges life throws at me.

When you feel pain, fatigue, desperation, darkness...just breathe. Lean into it. Realize that you may not be able to change it right now. As scary as it is, accept it. It won’t break you, I promise. Surrender, just for that moment. Take a deep breath and know that you can wrap yourself in Surrender and still have the strength to carry on.


Tuesday, May 15, 2018

Real Live Poetry

I have been witnessing real live poetry. I have been watching my twins during the past year, and the struggles and triumphs they have been through, and it’s pure poetry.

My boys are sophomores in high school now. About to end their sophomore year, actually- how did that happen? Just yesterday they were the size of a loaf of bread, and about as heavy. Now I watch what they are capable of as amazing young men, and I am astounded at who they have become.

One boy got up on stage a few weeks ago and belted out the most incredible solo with his choir behind him. MY boy! Say what?!? I said, he doesn’t sound like that when he’s rockin’ in the shower at the top of his lungs for 45 minutes! It brought tears to my eyes to see how confident and beautiful my boy is. He tried out for 4 choirs for next school year, and made it into all four. What?!? Amazing.

My other boy has had a longer struggle this year. First our IV treatment took its toll. Anxiety grew to the point my boy could no longer get to school. So then I had TWO boys- my sophomore and my 6th grader- who couldn’t go to school due to panic. Cri.Sis. Major crisis.

My 6th grader got into a therapeutic day school about an hour south of our home. It’s been slow, but we’re making tiny progress. My sophomore got into a partial hospitalization program (PHP) an hour east of our home. Guess who has spent the past couple months DRIIIIIVVVVIIIINNNNGGG???

And yes, the middle school district will provide transportation. However, my 6th grader tried the taxi twice, and almost got into a car accident on his second trial, so now he has vowed to never get into a taxi alone again. Gr.

My sophomore spent four weeks in the PHP. Every day, practicing his exposure therapy to desensitize his brain and help him learn coping skills to deal with panic. He worked so hard. He did his homework. He faced his biggest fears every day. It was evident that he desperately wanted to get better.

Yesterday, my sophomore “stepped down” from the PHP to the Intensive Outpatient Program (IOP). It’s a half day program, so my boy can go to school for half days also. Yesterday he took a taxi from his IOP to his school, and walked through the doors for class for the first time in several months. This boy. Pure poetry. I think about how far he has come, how many obstacles he has faced in his 15 years, all with grace, dignity, and courage.

I’m in awe of my children.

When I look at my twins, I still see the little 2 lb micro-preemies they were almost 16 years ago. And I wonder how a human so tiny can survive, let alone thrive. It takes guts to make it in life, especially when you’re a kiddo who has a lot of stuff stacked against you. My babies have more courage than anyone I’ve ever met.

In two weeks my boys start Driver’s Ed. Over the past few months, I didn’t know where we would be at by the end of May. I didn’t know if anxiety would take an even worse turn and we’d be somewhere even scarier. I didn’t know if things would be back to normal. I didn’t know if the boys would be able to take Driver’s Ed when I signed them up a couple months ago, but I decided to take a leap of faith and assume things would be better by the end of this month. It was sort of my mantra. By the end of May, things will be better. By the end of May, things will be better.

And things are better. I am wary of crises, because they sneak up on you and wipe your feet out from under you without you even having a suspicion they’re behind you, and it can happen at any time. But in this one moment, right now, things are better. And I am grateful for how far my boys have come these past couple months.

Watching my boys find their path through life is like watching real live poetry: unexpected, moving, complicated, beautiful beyond description.

Tuesday, April 17, 2018

Finding Hope Through The Hard Stuff

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I'm not one to complain, but I have to be honestsometimes I feel a little resentful about being a special needs parent. Throughout the years, I have had to learn so many new things in order to successfully parent my four sweet children who have special needs. Sometimes I’m tired of having to learn new things. It’s not that I don’t like to learn, it’s the kind of things I have to learn. Sometimes these things are not fun. I wish for my kids that they could have peace and health and ease. But often, the things our family goes through are difficult, and it's hard to watch my babies struggle.

When my kids were little, I loaded them in the van after school every day for therapies of all kinds, while my friends loaded their kids into their vans for soccer, baseball, basketball. I learned all kinds of tools while sitting in on therapy sessions. I learned about sensory diets, brushing, stretches for hip flexors that are too tight, how to deal with a child’s anxiety and not feed into it, how to build strength in cheek muscles so words can be pronounced correctly. I've had to learn how to navigate IEP's, how to hire lawyers and educational advocates, where to get the best neuropsychological exams. I've researched what types of holistic interventions will help with anxiety, ADHD, Tourette Syndrome. When I started making weighted blankets, I realized that some families have never heard of such a thing! I wished I had never had to search for ways to calm my children down, or help them sleep or focus.  

Sometimes I wish I didn’t know everything this journey has taught me. Because sometimes this journey is hard. 

In the past couple months, I’ve had a crash course in all kinds of new things. I’ve had to learn about what to do when one of my boys refused to go to school because of extreme anxiety. I’ve had to learn new ways to work with the system to get my son what he needs, which is out of the realm of “normal.” I’ve had to learn about therapeutic day schools. I’ve had to dig into anxiety even further and figure out how to help my boy adapt to a new environment. Even though the new school is a perfect fit for my son, it’s new. He doesn’t do ‘new’ well, so it’s been a journey. It feel like two steps forward, one step back, every day. But I comfort myself with the tiny little baby steps forward, because at least we’re making progress. 

Just when I think there can’t possibly be anything else drastically, devastatingly hard and new to learn, life comes up with new surprises.  

Just when I think I should be able to take a breath and be done learning about hard things, something new pops up. More anxiety, in a different kid, showing up in a different way. I’ve had to figure out what kind of documentation a school needs in order to have a child medically excused because his PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders associated with strep) is causing so much anxiety he can’t even function. Just when I’ve got one kid situated in his new therapeutic school, and I think we’ll get a break from crises, I’ve had to put my Advocating Pants right back on and go to work solving the problems of another kiddo.  

Last fall, my 15 year old twins did a 5-week course of IV treatments for their Lyme, Chronic Inflammatory Response Syndrome (CIRS, also known as mold toxicity) and PANDAS, called ozone therapy. One of my boys sailed through the treatment and has done amazing since finishing the protocol. Anxiety is reduced, there’s no more sensory overwhelm, his tics have gone. My other boy is a different story. I thought for certain that I’ve royally screwed him up by having him do the treatment, because he’s feeling SO much worse than before the treatment. It’s got to be my fault that he is suffering, living in a tortured, anxious body. I made him do the treatment and now he’s worse, while his twin brother is doing amazing after the very same treatment. As parents to special kids, how many times do we second guess ourselves? How many times do we wonder if our decisions are the right ones?

My boys did blood tests before and after the IV treatments. The results shocked me. The labs showed that the IV treatment has healed both of my sons from some very major infections that they could not get rid of no matter what treatment we tried prior to the ozone. I was dumbfounded and elated. And confused. How could the labs be so great, and my one boy be feeling so terrible? The doctor said our boy still has some infections that need to be treated. He has some things that need to be addressed, some inflammation that needs to be dealt with. And then maybe he will find the elusive healing we so desperately search for.  

But, at least I know that ozone was the right choice. On paper, my son is healing. Now we just have to get his body to a place where he feels like he is healing. I’m grateful that I can pack up my guilt about the ozone and ship it off. That treatment was the right decision. 

My boy with the anxiety started having panic attacks every day. On the bus to school. At school. At church. Anytime he was away from home. We were in crisis mode again. When we heard about partial hospitalization programs, and it was recommended that our boy attend one, I thought, “How can there be anything left in the world for a special needs kid that I don’t know about? How have I never heard of this before?” But sure enough, this was something new I needed to learn about.  

Frankly, I didn’t want to. I’m raw. I’m worn out from all the learning of all the things I don’t want to have to know. I don’t want to know about therapies and meds and special schools and special diets. I don’t want to know about all the kinds of supplements that might help anxiety. I don’t want to know about special programs for kids who can’t live life because of too much anxiety. Enough. I want someone else to do this hard stuff for me. Usually I can get through our tough spots pretty gracefully, but there are times when the days seem long, dark and lonely. On those days, I sometimes wonder-- when can I be done learning the hard stuff?

Our boy was number one on the waiting list at a top notch partial hospitalization program. We waited for three weeks for the call that would admit him. We finally got The Call, and our boy will start the program for teens with anxiety and OCD this week. He will go to this outpatient program every day for a few weeks. They will help us tweak meds, keep up with school, and learn new coping skills. I know this is what my boy needs.  

While driving my younger son the hour to his therapeutic school (because he’s too anxious to take a special school-appointed cab) I’ve had a lot of time to sit with my exhaustion and grief. I whined to myself, when will it be my turn to just have a “normal” week? I know, I know, there’s no such thing as normal. But in my funk, I fussed that my life certainly can’t be normal. 

Last week I confronted a fork in my road. I realized I could let this crazy season of life drown me and I could fall apart, or I can find a way to take care of myself and start swimmingI threw a ton of resources and self care at my worn out body and soul. A friend told me, once again, that these beautiful children were given to me for a reason. I was chosen for them. I’m not sure I’m qualified for this task I was “chosen” for, but I pulled my Advocating Pants right on up again and decided that I’ll meet the challenge as best I can, like I always do after a period of grief and exhaustion.  

Sometimes I wonder why I have to keep learning about all these things that make life so hard. I ask, “Why me?”  

Then I remember the time when I was running a support group for families whose children had Sensory Processing Disorder. Once, I met with a family who had just found out their little girl had SPD. They were scared and worried and overwhelmed. Going into the meeting, I was concerned that I wouldn’t know how to help the parents. Who was I to know how to help them?  

When I sat down with the family and they began asking questions, I had an answer for every single one. I had ideas they could try. I had advice to give. I had experiences to share. I surprised myself. I didn’t know how much I knew.  

You never know how much you know until someone needs to know what you know. Then you try to help them by brainstorming about all the things you’ve done with your own kiddos, and you realize what a wealth of knowledge you’ve accumulated. So in some ways, it is a gift to keep learning, even when the learning is hard. 

I think this is why my life path keeps me learning new things about the special needs world: so I can share what I know with other families and help them find hope. Otherwise, what’s the point? While I’m struggling through the quicksand of trying to find answers to our latest crisis, I don’t realize how much I’m learning. Once we’re through the crisis and I find myself in a position where someone asks a question about how to help their own child, I often find I have been in their shoes and can empathize. I often have some experience to share. If nothing else, I can be a safe place for others to vent, question, lament, grieve…and maybe I can help them find hope.  

Although I struggle with our family’s challenges and crises, when we’re back on solid ground I am invariably grateful for the journey we’ve taken, because it leads me to be able to help others. 

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!  
Want to join in on next month's Voices of Special Needs Hop? Click here! 

Thursday, April 12, 2018

Soft Spots

A few weeks ago, I went back to church. I haven’t been there for a while, because of a lot of things. Kids, craft shows, exhaustion…lots of things. Our kids are very involved in our church community, which I love, so I decided I need to step up and show up again.

The second I walked into our lovely, joyful, wonderful church, I second guessed my decision. As a friend wrapped me in a bear hug, I remembered the real reason I haven’t been to church very much recently.

My church makes me cry.

Our church is “contemporary.” Which means we have a rock band to lead our anthems and our pastor wears jeans and has a message that welcomes everyone in any walk of life. I love it. Everything about our church gives me the feels.

But when I get a case of the feels, I feel weak and vulnerable. I feel like there’s a chink in my armor and the fa├žade that I have carefully put together in order to carry on under unimaginable stress begins to crumple. It feels uncomfortable. From the songs we sing, to the hugs friends give, to the message the pastor speaks about hope and unconditional love— it all makes me feel. Which makes me feel like sobbing big, ugly sobs through the whole service.

I was chatting with my parents after this particular Sunday when I went back to church. I told them how I feel like crying every time I go. My dad, who is a pastor, said that’s because church is a soft spot, and my life is hard. So when I find a soft spot, it makes me a little weepy.

A lot of things make me cry when our family is in crisis mode. I try my best to stay away from those things that crack my hard candy shell and reveal my raw vulnerability. I try to stay away from them because I worry that once I crack and start letting out the feelings, they’ll overtake me and I’ll never recover, never stop crying. It’s better, easier, to just stay strong and carry on.

I had been able to have a part time job that I absolutely loved during the past couple months. But then the pieces of my life began to unravel as not one, but two, children fell into crisis. I had to scramble to pull out our resources, to figure out how to help my kids, to get their needs met. I had to figure out what schools needed for documentation to excuse my boy from school because he is in a PANDAS flare and anxiety is through the roof, making it difficult for him to function. I had a crash course in therapeutic day schools and partial hospitalization programs for teens who have anxiety and OCD. I hit the ground running and am doing the best I can to meet everyone’s needs.

In the midst of all this chaos, my coworkers were incredible. They understood me and empathized with me. One day, I drove my son to his therapeutic school- an hour away. He had a very tough morning because of anxiety and it was extremely difficult to get him to stay at his school. I finally got him situated, and drove the hour back home to work until it was time to pick my boy up again.

I cried most of that hour-long ride home. This is hard, people! This whole parenting, grieving, figuring out how to help your kids thing is the hardest thing I’ve ever had to do! To watch your babies suffer is torture.

I pulled myself together and leaned my head out the window into the cold wind as I drove the last few minutes to work, so my eyes would look somewhat normal again. When I got to work, my three supervisors were in the front office. One pulled me aside and gave me a gift bag. She said, “I want you to know I care about you.” I said, “Listen, don’t make me cry again. I just got done weeping for an hour.” I pulled out a beautiful gift, and read the tiny card attached to it. I burst into tears. My sweet friend said, “Maybe you should read the big card when you get home.” I laughed through my tears and gave her a hug. And then went into the bathroom to pull myself together, again.

I came out of the bathroom and tried to hold in my tears as I popped in the front office to apologize once more for being late. My friends all said they understood, not to worry. One supervisor said, “We have such a soft spot for you, Carrie.” They went on to say thoughtful, beautiful, kind things. To which I responded by completely breaking down again. I sobbed, “I already told all of you, you’re not supposed to be so nice to me because then I cry!!”

Then a coworker from the classroom I worked in stuck her head in the office. She saw me crying and enveloped me in her nurturing, supportive arms. I cried more. I went into my classroom and my other two coworkers were equally as kind to me, so I cried some more. I told them it’s so hard for me to hold it together when I’m confronted with pockets of kindness and empathy. They said it’s ok to cry, you can’t hold it in all the time.

I felt like explaining that if I start crying, I’ll just keep crying. And I could cry all day every day, at this point. Because our family is facing some scary, intimidating, dark stuff.

I’ve realized that whenever I hit a soft spot in my life, a place where I don’t have to keep my armor up, it’s uncomfortable because I feel vulnerable and so emotional. I guess we need soft spots once in a while, to let out our feels, to let out the stress. But when I find myself in a soft spot, I feel so emotional that I’m worried I’ll never recover, never be able to stop crying.

I’m a work in progress. I’m trying to find a balance between being strong and letting in softness. I’m not good at navigating the soft spots, but I’m so grateful for the bits of beauty and grace in my life that show me what it means to be soft.

I’ll keep practicing.