7.27.2016

OCD or That Moment When I Realized I Do NOT Have the Patience of a Saint!

It has been a while. For that, I am truly sorry. I miss the days when writing was fluid and consistent, when I had the time to sit down and put to paper, er, the computer screen all that had happened that day or week, sharing the laughs and the challenges and the sorrows that came our way.

But somehow, as if I never expected it to happen, life has been so full and overflowing that I have not had a second to spare. Or perhaps, I have not chosen to spare it on writing.

I wish I could report that the last few weeks had been all fun and games. I wish the only story I had to share was the one where Kurt and I were discussing what sport the little boys should participate in and Solomon, having walked in to the middle of the discussion, chimed in, in complete seriousness, "I want to be on a SWAT team."

 Later, when I came up to tuck him in and say goodnight, I found him like this, ready:

I wish I could bottle up his youthful innocence. I wish his 5 year old self could somehow remain close by as he grew up into the man he will become. (And I swear that room was clean and tidy earlier that day!) Sigh.

At any rate, these last few months have made me realize just how flawed I am as a mom. I used to think, 'wow, I must be a pretty patient person to deal with all that gets thrown my way with 5 kids, a husband, and over 50 animals.' But no. No, I am not. 

You see, several months back, we took our oldest daughter, Madeline, to England. She had been invited to train with the Wolverhampton Soccer Academy and we gladly took her. It was an incredible trip. We were so pleased. But upon our return, our world turned upside down. 

Madeline, the child we have never worried too much about because she is a hard worker, a straight A student, a kind and caring person, a talented athlete, (and the list goes on and on), broke.

That sounds harsh, so let me explain. We returned to PA the week before the PSSA testing took place in the schools. This state testing for Pennsylvania takes place over a two week period and the school places a HUGE emphasis on the tests, telling students that they need to do their best because not only is their knowledge being assessed but their teacher's lives are at stake! (Ok, ok, not exactly but the kids are led to believe that they are personally responsible for the assessment of their teachers....they were even told that this test was so serious and important that if they were to vomit all over their test, the school would have to send the test to the state to prove that the child had gotten sick......no pressure or anything.)

Anyway, the Friday before the testing, I got a call from the school. Madeline had broken down in the classroom, would I please come in because she wouldn't talk to the nurse or the guidance counselor. 

I was there in less than 10 minutes and Madeline and I sat in a private office as she told me that she had a problem. She told me that she knew it didn't make sense, that it was really silly but that she couldn't stop rereading questions, even after she knew the answer, she had to loop around and read and reread over and over to make sure she got every word correct. She broke down in the class because after 45 minutes, she had only gotten through two questions on the classroom work. And to make matters worse, if she breathed in through her nose, not her mouth, she had to reread it again. And to prevent herself from erasing and rewriting all her answers, she had to make tally marks on the corners of her papers and in order to get through certain things, she had to tap her thigh and click her fingers just right and......

The list went on and on. She cried and cried. I cried for her as I embraced her and told her that what she was dealing with was called OCD, that it was something we could get her help for and that she would get through it. Feeling slightly better, she went back to class and I explained to the counselor what she had told me.

The next two weeks were increasingly worse. Each day, it took her longer and longer to get through the tests. She panicked every morning when I dropped her off, often going into hysterics and begging to stay home. Each day, I encouraged her to get back into the classroom, to not worry about the tests, scribble on them for all we cared, they just don't matter at all so just guess and move on, or just put all C's for every answer, it simply doesn't matter. But, she is a perfectionist and would die before guessing or answering without fully knowing the answer.....

We found a therapist who used to work in the schools with high-achieving kids like our daughter and we got to work. However, after two sessions, the state testing now over and Madeline now unable to get out of bed, clothe herself or even eat, the therapist referred us to the OCD clinic in Pittsburgh. Our child was essentially paralyzed. She could not get through a morning, much less school or life. We were scared and sad and full of questions. What had happened to our incredible little girl?

Her doctors tested her for PANDAS because of the quick onset of the symptoms but really, when thinking back, she had already been struggling with OCD for quite some time. (If you remember the part of Nemo when Dory suddenly remembers Marlin and everything they have been through, that is like me, when I recognize that we have been missing the signals for a while....) Her second grade teacher had once asked if she was a bit perfectionistic because she erased and rewrote every word on a spelling test at least four times, even though they were all spelled correctly the first time. She had bloody hands every winter from the obsessive hand washing which we thought we had gotten somewhat under control. She had tantrums we just chalked up to hormones. She had freaked out several times this year because of questions like: "What if I cheated on that homework? I don't think I did but I saw someone hand in theirs before I was done and what if I saw the answer and then just used their answers?"

In retrospect, there were already signs but we missed them. 

The Intensive Outpatient OCD clinic referred us to a private therapist whom we began working with. For over a month, Madeline sat quiet, unable to participate and then broke down into full temper tantrums and hysterics the entire 30 minutes home, and for hours thereafter. She could not get out of bed in the morning without my help, could not get dressed, could not pick anything up, touch doorknobs, buckle or unbuckle her seatbelt, or go to the bathroom without staring for long periods of time at the toilet paper and then the hand soap as she washed and rewashed her hands. She couldn't turn on a shower, or bathe herself without me talking her through it, handing her scrub brushes, soap and shampoo, in just the right order. She could not put on shoes without me tying and retying them dozens of time, until they felt just right. And don't get me started on soccer cleats and socks and shin guards. 

For months, we lived this private hell. She would awake screaming in the middle of the night, every hour on the hour. She could not even get to sleep without me holding her down and then sitting in her room for hours. And as Madeline suffered, we all suffered. 

There were moments when I felt like our world was caving in, like we were losing our child. I worried that this was her end, that her brain was literally breaking down and she would be lost forever, like in the movies when the main character sinks deeper and deeper into insanity.

I immersed myself in books, trying to understand this battle we were facing. I spoke to the therapist via email and text, and scoured the internet, trying to understand. This wasn't the funny, "OMG, I am sooooo OCD" type of thing; you know, how we throw the term around when we like things symmetrical, in order or "just right" but really, we just have a strong preference. 

What we were facing seemed more like a monster. What we were experiencing seemed more like hell. 

And this is when I realized, I am not a saint! I know, I know, shocking. (Those of you who have known me for a long time, just go with it.....) Because the more and more I went without proper sleep, being awakened by screaming at all hours of the night, sleeping on my child's floor or draped over her to keep her still and calm, the less well I managed. 

At one point, I recall cursing at her, actually telling her "I F'ing needed to sleep, so please stop the screaming already because I can't do it anymore and I will have to admit you to a hospital if you keep it up." 

(In case you are wondering, threatening a kid who is struggling with a mental health disorder DOES NOT CALM THEM DOWN.)

It has been almost four months since this all began. It has not been an easy ride and I am not as good of a person as I had once thought and am fully aware of areas I need some major growth. (And seriously guys, don't mess with me when I am lacking in sleep!)

That said, I am so happy to report that not only is Madeline functioning again, doing all things for herself that had been temporarily suspended, but she is currently finishing up a residential soccer camp here in Georgia with her sister. She has spent the last few nights on her own in a dorm, training with a professional academy, participating fully in an experience we weren't sure she was capable of only weeks ago. 


And clearly she is enjoying herself!




She is not cured. She is still struggling with intrusive thoughts, "what if" questions about not being able to breathe, about choking, about death, about contamination. She still gets stressed and starts washing hands and repeating things and seeking reassurance. She still calls and asks these crazy questions that she knows are completely irrational but she has to ask anyway, because OCD requires it. But......BUT! 



                                                  

She still soars......the heights just vary, depending on the moment, and with each passing day, with the proper medication, the therapy sessions that are now productive and making sense, the work we are doing as a family, Madeline is fighting back and is showing us that she will survive this and yes, even thrive. This hardship she is facing will make her stronger, maybe not today, maybe not tomorrow, but eventually....and perhaps the rest of us will grow a little, too. 

So, dear readers, I am sorry I have not written, but life has been full. It has been crazy and hectic, at times hilarious and fun, but sadly, full of scary and painfully challenging moments. Truth be told, it has challenged us to our core and made us reconsider everything we once thought to be true. But it has been real. Even in the midst of despair, as we have wrestled with the unknown, it has been real. And, today, we are thankful.