Monday, August 31, 2009

The Little Streaker

Just one quick random story...

Today, my son figured out how to take his own shirt off all by himself. He is so proud of himself and has decided that he LOVES nudity! As a result - I have had to put his shirt back on him about 50 times today. About half of those times he also took his pants off so what I saw was a little streaker run through my house.

Hope your day was this good!

Saturday, August 29, 2009


A good friend emailed me a very interesting link the other night and it has stuck with me. The link shows amazing pictures of a 48 year old elephant named Motala receiving a prosthetic leg to replace the one she lost 10 years ago to a land mine. Now, before I proceed with this blog let me be clear about something...I LOVE animals. I was a vegetarian for years until my oncologist told me I needed to eat meat during my six months of chemotherapy. So, I am not one of those people who are indifferent to the cruelties that happen to animals. I am, however, aware that people are more important. I know that sounds harsh, but lets be honest...if a person had an animal in one cage and a person in the other and said YOU had to decide which one lived, I would HOPE you would pick the person.

All that being said, I really do love animals and, as a fellow amputee, I was happy for the poor elephant when I saw the pictures, but something bothered me. I know how much prosthetic legs cost for a person (mine was around $70,000 - thank heavens for insurance) so I can't even imagine how much one would cost for an animal that size. This elephant's was paid for by donations from people who were touched by the story of how this poor elephant lost his leg. It is tragic, I won't argue that, but so many small children every year lose limbs to land mines and this money could have purchased prosthetics for them. Again, I know this sounds harsh, and in a perfect world there would be enough donations for both - but there aren't. Unicef explains that countless children in other countries have to go without prosthetic limbs because there just isn't funding. Although the pictures of this poor amputee elephant receiving her new leg warmed my heart, it left a bad taste in my mouth when I thought about all the poor children who will never get to walk again. So, if you feel compelled to help one of God's creatures walk again, please donate to the Red Cross and help a child gain his freedom.

Wednesday, August 26, 2009

Vaccinate Your Children!

Today I accompanied my daughter to preschool orientation at the local MRDD school that she attends. While the children are off in their classrooms meeting their fellow classmates, we parents attend an informational meeting run by the school principal. Unlike a lot of meetings we adults routinely attend that are a complete waste of time, this "informational meeting" was actually informative. What a shocker!

The principal was welcoming; the speech therapists and occupational therapists were enthusiastic; and the adaptive PE teacher was almost over-flowing with excitement about the coming year...all things you hope to see in people who will be working with your child day-in and day-out. Then the school nurse started her presentation and my great mood went right out the window with the mention of two small words: communicable diseases.

She was showing all of us parents a sheet that might come home with the kids at some point during the school year if our children have been exposed to a communicable disease. She said that the only reason this EVER goes home is for strep throat/scarlet fever because childhood vaccines have gotten rid of the risk for the "major" communicable least that used to be the case. Sadly there is a growing number of people who are deciding not to vaccinate their children. It is no wonder, with the Jenny McCarthy's of the world spouting off about vaccines causing Autism. First of all, let's pretend vaccines caused my two children to have Autism (which there has been NO scientific proof to support this claim) - do you know what is worse than Autism? Polio! But don't just take my word for it - the CDC (Centers for Disease Control) also explains why vaccines are necessary.

Some people ignorantly believe that their decision to NOT vaccinate only impacts their child but that is so short-sighted. My little nephew is only 3 weeks old - too young for vaccines. What if he is exposed to an unvaccinated child who is contagious with a communicable disease? My sister didn't have a choice yet about vaccinating her child - why should someone else get to willfully endanger her child?

So as I sat there in the informational meeting this morning, I wondered whether the nurse's presentation would be different in a few years. Will future parents have to sit and listen while the nurse explains what they should do when the communicable disease sheet comes home with a check mark next to Pneumococcal?

Tuesday, August 25, 2009

Crazy chick on the highway

As I sat here tonight thinking about what I wanted to blog about I started replaying my day in my head. It suddenly occurred to me that someone out there might be blogging about ME tonight.

As I drove the long commute to Cleveland this morning I was ROCKIN'!! Will didn't have school but I was still scheduled to work & a long commute without Elmo DVDs meant I could actually jam to some music. After downing my usual 3 or 4 cans of Diet Mountain Dew I was a ball of energy racing down I77 North. I had my IPOD plugged into my car stereo and was blasting at a deafening level some of my "feel good" tunes. Now, some people might tap the steering wheel along to the beat or bob their head from side to side...not me...I was full-on dancing in my car and loving every minute of it.

Usually my long car rides with Will are a time for me to really think about everything that is going on in my life. As you can imagine, those aren't always the most uplifting thoughts, so on this particular morning I decided I was just going to be happy for the hour and a half that it would take me to get to work. I didn't want to think about the upcoming move or the kids' therapies or the problems I've been having with my prosthesis lately...I just wanted to escape for a little while and maybe give a few passing cars something interesting for once to text about - "just passed crazy chick on the highway." I knew my worries would still be there later but for the time being all I wanted to do was sing at the top of my lungs: "unskinny bop bop bop bop" - yep, Poison was my "happy pill" for the morning.

Saturday, August 22, 2009


We have been looking forward to today all summer...
the BIG horse show. Both of my children ride at a therapeutic horse farm called Pegasus Farms. It is an amazing place and my children look forward to their year-round lessons as the highlight of their week. They had been preparing for today's show all summer, and with the weather cooperating, we had a wonderful day. By the way, both children did really well earning ribbons in all of their events.

The real joy of today though was witnessing all of the dozens of people who all year long volunteer at Pegasus. These individuals are so patient and caring. In today's hectic world it is amazing to me that there are so many people willing to donate their precious free-time to help special needs children gain some freedom. Without these dedicated volunteers, Pegasus would cease to exist. They do it all: clean stalls, turn-out horses, polish equipment, assist riders during lessons, keep the grounds beautifully manicured, and anything else that needs to be done on a daily basis. All of this for nothing more than a "thanks."

So, thanks!

Wednesday, August 19, 2009

The Best Kept Secret

Deciding whether or not to move to a new town, when you have children, involves more than looking at the prices of real estate. You also have to check into the school district. This is usually a pretty easy thing to do - in fact, most good realtors can give you some great insights into which school districts are "good" and which are "questionable." No biggie.

Deciding whether or not to move to a new town, when you have special needs children, involves some real detective work. You see...the "ranking" of a school's special education program is a secret - bet you didn't know that. You can try to ask other parents of special needs children but they are rarely of any significant help. The ones that are receiving exceptional care for their child are usually under a confidentiality agreement by the district to not disclose information pertaining to services rendered. I swear I'm not making this stuff up. Usually the only vocal parents are the disgruntled ones and that isn't always a true indicator of the district's committment to their special needs students. And...if you call the district directly and try to get information you are informed that they can't even have a conversation with you regarding services that they do or do not offer until you have purchased a house in their district (of course by then it is too late to bail if the school is a real dud).

So, as my family begins the process of looking for a new town to move to, I channel my inner Sherlock Holmes and try to gather as much information as I can. But ultimately, I cross my fingers and hope for the best. Wish me luck.

Sunday, August 16, 2009

Happily Married

Before I get started, I want to say how thankful our whole family is that my nephew Owen is o.k. Without going into a great deal of detail, my nephew - who suffers from Autism - escaped from a fenced in yard while under the supervision of a babysitter and made it all the way to a major road before a good citizen stopped and grabbed him. This is one of my biggest fears. My son, like my nephew and a lot of children with Autism, doesn't realize the dangers of wandering off. So, tonight I give a little prayer of thanks that my precious nephew crossed paths with someone willing to stop and help a little child.

Today my husband and I celebrated our 12 year wedding anniversary. I could go on and on about how wonderful my husband is: supportive, loving, sensitive, devoted...but all of those tremendous qualities are not what has made our marriage so successful. We have been faced with more challenges in our 12 years of marriage than most couples face during the entire course of their relationship, and through it all we have continued to make our marriage a priority. We cherish each other and never miss an opportunity to tell each other how much we care. But maybe there has been more...

I can't help but think about how much our families have helped us over these past 12 years. My parents caring for me & my newborn son during chemo so that Bill didn't have to quit his job; watching our children occasionally so that we could go out for a few hours and take a much-needed break; helping financially when the costs of our children's therapies were more than we could manage alone; and the list goes on and on. Maybe we would have been able to weather all of these storms alone, but I'm glad I'll never have to find out. So, today I want to thank my husband for never failing to make me feel beautiful and loved - and thank our families who are always there when we need them to help lighten our load in any way they can. A good marriage requires work and dedication but it sure is a lot easier with the faith and support of a loving and supportive family.

Friday, August 14, 2009

The Bottom Line

Imagine you are told that you have to get to "City XYZ." Getting there is practically a matter of life and death. You ask for a map and are given dozens. Each one offers a completely different route along with a disclaimer stating: "map may or may not lead to City XYZ." But these maps are all you have. Which one do you follow? Even if you pick one and start on your way, how long do you travel on this uncertain path until you give up and try a different map? Imagine how you would feel? Frustrated...afraid...angry...but you can't give up until you reach City XYZ.

This is life with Autism. From the day my son was diagnosed (and then later his baby sister), I have been offered countless opinions on which course of action I should take in treating my children. There is no ONE agreed upon treatment method. You have to use trial & error to see what works for your child since every child on the spectrum is different. Even my two children exhibit different traits and therefore require personalized interventions. So you try something. Then you try something else. All the while knowing that time is the enemy - every day without appropriate intervention is a day lost to Autism - A day your child slips further away from you. Now add to the mix the cost. Can you afford the treatments your child desperately needs?

So why do I bring this up? We need to change the way insurance companies view Autism. Let me take a pause here to be clear about something - I am not suggesting that the government take over health care (I'll save my opinions on that subject for another day), instead we need to fix the current system. Most of my children's' interventions are not covered by insurance because they are deemed "educational" and not "medical." Or, my favorite - experimental. Of course they are experimental. No one has figured out yet how to help our kids!!!! Yes, Autism is in the news a lot these days. There are countless books and interviews about this destructive disorder, but awareness isn't enough. We need action.

If, as a country, we don't feel a call to action due to our responsibility to care for the least of us, we should certainly be called to action because of the bottom line. 1 in 150 children are being diagnosed with Autism. If we don't give these children the help they need to one day become independent individuals who do you think is going to pay to care for them?

Wednesday, August 12, 2009

Little Drummer Dude

Check out this amazing video.

Real Strength

Even though I am the eternal optimist, I still have bad days. Today is one of those days. I've always been the kind of person who is really good at expressing joy, excitement, know, the "happy" feelings, but not so good with fear, depression, despair...the "sad" feelings. Because of this, most people who meet me probably think: "wow, you are so strong - you are always so positive." News flash - I'm not. Today's entry is going to be short and to the point: being strong doesn't mean never admitting that life is hard. It doesn't make you weak to admit that you need help or to let yourself cry when you're feeling overwhelmed. Real strength is admitting that you are terrified of what lies ahead and yet still pushing on. So, let me take my own advice and admit: today I feel overwhelmed. I feel sad about my children's struggles; angry about my own physical limitations; and frightened about the unknown future of my family because of all these obstacles. Today is not a good day - but I am optimistic about tomorrow.

Sunday, August 9, 2009

Big Shoes

Let me tell you a little story...

My younger brother has always been the kind of guy that guys want on their side and girls want on their arm. Extremely handsome, athletic, intelligent, a little hot-headed, but very loyal. As he neared thirty he finally met a woman who calmed his party-boy ways. She brought out the absolute best in him and we all loved her for that. They were perfect for each other: she loved cooking and he loved eating; she loved working out and he had always taken pride in keeping himself in perfect shape; they both loved going out and having a drink but equally enjoyed staying in with a pizza and a good movie...the list goes on. We were all ecstatic when we heard that he had proposed and she had accepted, but our joy was short-lived. Only a few weeks later, while driving home from her apartment, my brother was hit head-on by a drunk driver who crossed the center line. The other driver was killed almost instantly and although my brother's life was spared, he was left with two legs that had been completely crushed. Doctors told us they didn't know if he would ever walk again. Let me stress a point here - we aren't talking about some couch potato here but a guy who participated year round in a variety of men's leagues: soccer, softball, basketball, bowling, etc...a true jock.

With the wedding only 10 months away my brother vowed that he would walk down the aisle with his bride. For the next ten months he endured multiple surgeries to reconstruct his legs and extruciating physical therapy. My parents lived with him for months, helping take care of him and drive him back and forth to appointments, and his dedicated fiancee never left his side. I hate to skip ahead because it really is an amazing story worthy of telling, but since this is a blog and not a novel I'll tell you how the story ends.

Not only did my brother walk down the isle but he also shared a first dance with his lovely wife. I will never forgot how proud of him I was on that day; not because he had walked against all odds, but because he hadn't let such an unfair tragedy ruin his life. He was happy. Truly happy despite the pain I knew he was feeling.

Now, almost 2 years later, they just welcomed their first child - a healthy little boy. As I sat in their house today holding little Paul Sherwood Wright, III all I could think about was the big shoes that little guy had to fill - not because his Dad had once been a great athlete, but because his Dad is a great MAN.

Saturday, August 8, 2009

Hidden Blessings

Although having two children with Autism can be heart-breaking, it has also given me a tremendous blessing that mothers of typical children don't usually receive...the gift of being able to appreciate the little things. Take today for example. We live in Canton, OH which is home of the Football Hall of Fame. This week has been Hall of Fame week with a variety of events taking place, all leading to the big event today - a huge parade. Now for the parents of typical children, deciding whether or not to attend the parade probably involves a debate about weather conditions and general health of the little ones (a sleepless night due to a nasty cold will probably ensure that the family stays home). The decision for my husband and me took a lot more thought. Would the children be able to tolerate the wait since early arrival is crucial if you are going to get a seat with a view? Could my son - who suffers from strong sound sensitivities - be able to tolerate all the loud noises associated with a parade? What if one child loved the parade and the other had a complete meltdown (a true "meltdown" is not easy to handle - especially not in a crowded situtation)? And the list goes on and on. After talking about it all week we finally decided this morning to give it a try....drum roll was GREAT!

We arrived at our waiting spot at 7:30 a.m. and the last police car drove past us at 10:30 a.m...yep, we made it through the ENTIRE parade. Talk about exceeding expectations! On the ride home Bill and I talked about how uninterested most of the crowd around us seemed. I guess in today's high-tech, fast-paced world, most people just aren't as impressed with parades as they used to be. But for us, it was about more than just watching marching bands and large cartoon balloons - it was about participating in life. There we were, standing with the rest of the crowd watching a parade. We were so proud. People around us probably thought I had been hitting the bottle a little early this morning since I was waving and applauding enthusiastically at EVERY float, cheerleader, clown, and old person perched on a convertible. We knew the work it had taken to get to the point where our children could handle an activity like this and we knew that we would remember this experience forever. I sit here tonight and think about today, I feel blessed. Blessed to notice the little things in life that so many people take for granted.


So this is my first blog entry…wow…kind of a lot of pressure. Since I am hoping that people will come back again to hear what I have to say, I really gave today’s comments a lot of thought. What is the first thing I want to say to all of you? What is the purpose of this site?

First of all, let me explain the crazy title of this blog – Phantom Pain. For those of you lucky enough to not know what this term means, here’s how the medical community defines it:

Phantom limb syndrome: The perception of sensations, usually including pain, in an arm or leg after the limb has been amputated. The brain still gets messages from the nerves that originally carried impulses from the missing limb.

Now for the real definition…phantom pain, for me at least, feels like someone is electrocuting my left foot…which is gone! Get that? You literally feel pain in a limb that is GONE! Insane! You can’t think your way out of it no matter how hard you try to tell your stupid brain that there is NO foot there. Luckily, my doctors have found a medication that dulls my phantom pain to a tolerable level – unless I don’t get enough sleep (which, with my two little ones, happens quite often) than no amount of medication can convince my brain that my foot isn’t on fire.

So what does all of this have to do with my blog? Phantom pain is the epitome of life kicking us when we’re down. Life isn’t going to hold back any punches so you have to be ready to fight back. I know that sounds dramatic, but sometimes it really is a fight to remain optimistic about life. There are days when we all feel completely overwhelmed and disappointed with the struggles of life, but we can’t allow these feelings to consume us. When we get knocked down we have to brush ourselves off and get right back up. Like it or not – we have very little control over much of what life throws our way, but we always have control over how we deal with it. So life takes my leg and then just for fun gives me horrible phantom pain. There is NOTHING I can do about that, but I can do something about my attitude. I could have felt sorry for myself and given up on life – but I didn’t. I could have become bitter and resentful to those that love me – but I didn’t. I could have let the realization that life isn’t fair completely consume me so that I was nothing but an angry, mean person – but I didn’t. At the end of the day, we are still responsible for the people that we become when we are faced with tremendous burdens. We have to take ownership of that.

So…life may have dealt you a crappy hand – I am truly sorry – but it is up to you now to decide how this struggle is going to change you. Is it going to destroy you or make you stronger? There is so much joy in life if you just look for it. You may have to look a little harder these days, but trust me, it is there.