Tuesday, July 26, 2011

Selfless or Self Less?

     I was watching The Today Show this morning and they had a segment about women who choose not to be mothers. Ann Curry interviewed a woman (whose name I don't recall) who wrote a book on the topic. During the course of the interview she mentioned that she had received the exact feedback that she had anticipated. Comments like "you are selfish" or "you will regret it one day when it is too late". She of course does not expect to feel that way ever. For some reason the interview has stuck with me and I have been thinking about it all day.
      The truth is, it is not a feeling I understand. I have always wanted to be a mother.  I honestly can not imagine what it would feel like to not want to experience the most amazing kind of love out there. It is not a love that can be described to someone who has not experienced it. You can't explain how holding your child for the first time feels, or the joy you experience when watching them take their first steps, the first time they hug or kiss you or the first time they pretty much do anything.You can't explain what it means to be truly selfless. What it means to really never put yourself first.
     Recently I have been experiencing something else, something that I believe goes hand in hand with this. I have been feeling to some degree the loss of self. I don't mean being selfless, I mean the changing from the person I was to the person I am now. I think it's natural, I think once you become a parent your life is changed forever. You are never the same person you were because now you have to evolve to fit your new role. That is not what I mean, as the mom of a child with special needs, I find that being that person, that mom, is all consuming. It is the axis that my entire world spins on. It is part of everything I do and every conversation I have. There is no putting it down or away. There is no vacation from it. As a result it, in large measure it defines who I am. I am no longer the care free, I can get over everything that comes my way person I was. The person who used to pride herself on being able to "move on and move past" every difficulty that came my way. The one who never allowed things to completely weigh her down, and when they were heavy allotted a time by which they had to be shaken off. I can't do that any more. Every decision is monumental and every need is great. The constant of "what will be and what will he need next" is always on my  mind. The idea that this is forever, it is not strep throat or some other small childhood illness that will go away. The knowledge that there is no cure is a weight to carry around all the time.
     Don't get me wrong, it is not all bad. Just like you can't describe to a person who isn't a parent what it is like to experience the joys of parenting you also can't explain to the parent of a typical child how it feels when that child, who you were told may never walk, walks for the first time. Or the elation when he speaks his first sentence, or the happiness on his face when people understand what he is trying to say to them. The way it makes you feel to watch him have a profound impact on the lives of the people around him. The way people love him and the way he loves so wholly and unconditionally. It is truly amazing.
     Sometimes I miss my old self and sometimes I am grateful for who I have become. Often I feel like my life is spinning off of its axis but some days I truly feel it turning towards the sunshine.

Wednesday, July 20, 2011

The Memory Game

     Recently, while on a call with my boss, he commented to me that it seems like I have the potential for a great memory but am always so busy that my memory is actually only fair. He went on to say that while I am great at my job he can only imagine what a super star I could be if I didn't have a million other things on my mind at any given moment. Not really what you want to hear from your new boss (although, I do believe he meant it as a compliment, or maybe I just hope he did)! Ever since that conversation, I have been thinking about what my brain can hold and what is reasonably fair to expect of it.
     Here's the thing, I am constantly on the go. I am always rushing to be someplace and to get something done. There is nothing worse to me than finishing one errand with 10 minutes to spare until the next thing on my list, because I hate wasted time. I will inevitably try to cram something into that 10 minutes and then frantically be rushing to the next stop.
     I am always balancing a million things at once. There's work, and 3 kids, endless therapy and doctors appointments, school and camp bags to pack, a bus to make, dinner to prepare and a million other things in between in any given day that I can't even remember right now. I am sure many of you know exactly what I am talking about.
    I am constantly telling my husband that I am a multi-tasker while he can only do one thing at a time (and sometimes just barely one). His response is always the same,"yes you can do many things but how many of them are you doing completely."
     The truth is I think that is a fair question. What's the right answer? To always be doing a million things but never actually being able to devote yourself entirely to each of them or to focus on one thing at a time and never get everything done?
     I am not really sure what the answer is but at least now you may understand better why I sometimes repeat the same stories to the same people and never seem to remember who I have already told what to. Why I call you but can't for the life of me remember why when you call me back, why my kids eat more processed food than they should and get forgotten at school and most of all why I always have a cup of coffee in my hand, it's my version of speed!

Wednesday, July 13, 2011

The Kindness Of Others?

     I originally sat down to write my Blog last night (Tuesday). I was going to start off by saying that I am sure by now most of you have seen the amazing video of our son and his incredible experience with Fedex. I was going to expound upon the kindness of strangers and talk about the countless people we encounter all the time, who show considerable kindness to him. I was going to list all the mailmen who let him deliver the mail with them, even though he can be quite disruptive and annoying; Who bring him official USPS hats and let him carry their mail bags. I was going to mention the school bus driver at his school, Mr. Tinsley, who lets him climb on the bus each and every morning and afternoon and touch the school bus patch on his jacket, who knows him by name and makes him smile everyday. I was going to go on and on about how amazing it was that each of the Fedex employees in that video came to work on a Sunday to make a little boys dream come true. I was going to tell everyone how lucky we have been to have met so many amazing people who have contributed to his happiness.
     But then I saw todays news and I thought to myself: here I have been thinking about how amazing so many people can be and look at the horrors that others can perpetrate. So instead of thinking about how wonderful people are, I have spent all day thinking of how terrible they can be.
     My mind can not help but see that little boys beautiful face. I can not stop thinking about those parents whose lives are irrevocably changed, who will never again get to hug or kiss their son, who from now on instead of seeing his smile have to imagine the horrors he lived through before he died. The pain that one horrible person can inflict somehow seems to obliterate the kindness of so many others.
     Today, instead of smiling at the UPS driver passing by, I made sure to talk to my children about stranger danger. We told them never to speak with them, no matter what they say or do never go any where with them, don't accept candy from them. Simply put, do not even look at them.
     As I sit tonight and think about it all, I truly want to believe that the incredible and amazing kindness that we have seen, that has been demonstrated to our son, is what is real. That the world is actually full of goodness and amazement. It is filled with everyday people who do extraordinary things. That the place where we are raising our children is a safe and happy place to be. I hope this is true, because I would very much like to be able to believe it myself.

In case you haven't seen the movie, here is the link (it will make you smile): http://www.youtube.com/watch?v=6_qJPo4YoG0

Wednesday, July 6, 2011

P.A.N.D.A.S- and not the cuddly bear

     I have a strict rule, one that I have lived by for about 5 years. I never Google it. What do I mean? (since obviously I use google all the time like every other person on the planet) I never look up medical things on Google. Over the years we have had many scares with our son. We have had all sorts of weird symptoms pop up and all sorts of bizarre medical occurrences. We have seen it all. We have been to many doctors, we have seen specialists that practice speacialties I didn't even know existed, we have reduced our pediatrician, who is entirely a man of science, to making the diagnosis of "it's Yonatan"often instead of an actual medical condition, since there seems to be no clear answer, but like I said, through all of it, I stick by my rule.  I never Google it. Well, until recently...
     A few months ago we were having dinner with friends and talking about our son. The husband was asking us all sorts of questions about him and we were telling him all about our son and what some of the challenges we face are. The next day I got an email from this friend saying that he thought he may have lit upon what was going on. He had googled all of the "symptoms" we had described and come across an illness called PANDAS. After that first email they kept on coming. Email after email with case studies and medical information describing PANDAS. So like the good mother I am, I forwarded it all to my pediatrician and asked him what he thought. After reading up on the info that my friend sent we both felt that he did not fit the pattern of kids with PANDAS. I called my friend back and told him that I thank him so much for his help but this isn't what Yonatan has. He responded by telling me that he would not rest until we went for the simple blood test to see if it might be this. About 2 days later my doorbell rang at 7:30 am and it was the same friend dropping off a book that he had ordered for me on Amazon. The book was written by a mother who had a son with PANDAS. Like he said, he would not rest. So, I read the book and even though I did not think the symptoms described there were exactly like what we were dealing with I said to the pediatrician "we have poked and prodded this child for every little thing, why would I stop at one more blood test" and so we did it.
     PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. In essence it is what can occur when a strep infection goes untreated. The strep antibodies continue to grow in the blood and can cause all sorts of problems. One problem that they can cause is OCD (obsessive Compulsive Disorder). While our son does not wash his hands repeatedly or tap his nose and feet he does have a severe problem with obsessions. Anyone who lives near us has seen the little boy who delivers the mail all over our neighborhood because he is obsessed with the USPS. He is famous at our local post office and all the mailmen know him. A year or two ago, if you had us over, you probably remember quite well the obsession with bottles that he had, and who can forget the doors, he could open and close those for hours. (PANDAS is an extremely controversial medical diagnosis for various reasons and is also not well known.)
    About a week after we went for the blood test the results came in and sure enough my sons strep levels were way elevated.  I researched and googled and spoke to the mother who wrote the book to learn more. She told me that while a typical PANDA is a child who is normal all his life and then one day develops the symptoms of PANDAS she does know of stories of children who were never normal, who never spoke, or acted like normal kids and then once treated for PANDAS were healed. The crazy thing is that the potential cure for PANDAS is long term high doses of anti biotics. Something so simple!    
     And so we began our journey. After the initial two weeks of anti biotics we could not believe our eyes. The same child who had been recorded as speaking about the mail truck at least 35 times in a 30 minute period at school went an entire day without talking about it. While out walking we were able to get him to wave to the mail trucks we passed instead of delivering the mail to each and every house. We were floored and thought to ourselves: is this even possible, for 6 years we have lived with this and now look, it can be cured by anti biotics! After the first two weeks though things seemed to settle. While there were many significant changes in our sons behavior it was no longer miraculous. He has definitely changed for the better while on the anti biotics but he is by no means cured. At this point I can't even say for sure that he has PANDAS (since while the blood levels are an indicator they are not a clear diagnosis) but still we are continuing to explore this avenue. We are trying some of the different treatments and still hoping that they can help him. With PANDAS, it's kind of "treat it and see is it gets better" and so we are.
    So whats the take away here? I probably would still hesitate to google things because who really wants to have to sit and imagine half of the awful things you can find online but I will definitely continue to share my stories with friends because you truthfully never know who is going to have the insight that may make a big difference. You just never know where the missing link may come from or the the thing that was there but you missed because you were knee deep in t and couldn't see what was all around you. You know what they say "It takes a village to raise a child" in our case it may actually take a city :)

* for more information on PANDAS visit http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdf

or just google it!