Saturday, June 30, 2018

My New "Relationship" with the Sun

Long gone are the days that I would sit on the beaches of the Atlantic Ocean for HOURS at a time with just baby oil on my skin for protection. When I look down and see my 3 1/2 inch scar on the back of my left calf, I know it was a very small price to pay for getting diagnosed with Malignant Melanoma Stage 1B Skin Cancer in January of last year. Melanoma is a deadly cancer. I know that I was really, really lucky that it hadn't spread to the rest of my body. Once you have Melanoma, your chances of getting it again increase. The sun and I have a much different "relationship" now. I mow the lawn with sunblock, sunglasses and a hat. The umbrella we have been using for years is not meant for a table on a deck - it's barely bigger than a regular umbrella. I did some research and got a nine-foot umbrella with UV protection - I didn't even know such a thing existed! Even though it is the summertime, the first time I went to my dermatologist after my surgery, I got an "earful" about wearing nail polish on my toes - one of the signs of Melanoma shows up as black streaks on your fingernails/toenails - you can also get it between your toes! A few years ago, I was diagnosed with Glaucoma.  I go for exams 3 or 4 times a year. When I went to my first appointment after my cancer surgery and told my eye doctor I had Melanoma, he tilted the chair way back and checked to make sure he didn't see any cancer in my eyes. I also have cataracts and get my optic nerve tested from time-to-time. It's quite a production, but worth every minute I am there. It was my primary care physician who discovered my abnormal mole on my calf at my physical and immediately took a biopsy. It just happened to be a mole I had already been watching. I shudder to think if it been one I hadn't been watching. I typically don't dispense medical advice, but the next time you have a physical, ask your doctor to do a quick full body exam. I personally think it should always be a part of a physical, no matter the age! Though rare, children can get Melanoma. I still enjoy the sun, but I am lot more careful.  Please, please, please don't make the mistakes that I made, not wearing sunblock and thinking I was invincible. It could catch up to you one day, just like it did with me.

Wednesday, June 20, 2018

Continuing on the "Path" to Independence

Something happened last Friday night that I thought would never happen, at least not for another couple of years. Do you want to know what that was?!?!? Well, let me tell you!! We attended a party for a neighbor's daughter who just graduated from high school and we left Dominic by HIMSELF in our house for about 30 minutes!!! We had explained to him thoroughly where we were going and when we would be back. We also asked him if he was okay with it and he said yes. The party was literally across the street from where we live, but still. Both the hubby and I wanted to go to the party and we both knew if we brought Dominic, the minute he saw a bug, he would go running back to our house, dragging one of us back there with him. We timed it perfectly, because from 7-7:30 p.m. Dominic watches his absolute favorite show, "Wheel of Fortune." Nothing short of a tornado taking the roof off of our house would disturb him while he is transfixed to the television for that half hour! Since Dominic was a toddler, I have told him, "don't open the door to strangers."  I knew he understood, but up until recently, he couldn't tell me that he understood. When he and I are alone in the house and I need to take a shower, I hoped and prayed that he wouldn't let a stranger in. A few weeks ago, as I was stepping out of the shower, I heard the doorbell ring. I don't know how long the person had been there, but Dominic did not answer the door! The hubby was coming back from somewhere at that exact moment and he ended up answering the door. I was SO proud of Dominic, he listened to me! Lately, when I have been reminding him of things, he will ignore me. But, that's not Autism, that's called being a teenage boy! LOL. For a few minutes at the party, I actually didn't worry about him. In the very back of my mind, I knew there was a small possibility he could have a seizure, but he has gone about 3 1/2 months without one. I think we have finally gotten the right dosage of the anti-seizure medications!! I know that I sometimes (okay, more than sometimes) "baby" Dominic.

It really doesn't do him any favors, if anything, it prohibits his independence. It's really, really hard for me to not want to do things for him. I think it's in my nature, I am the oldest of three and I've always looked out for someone, starting with my little brother. When the hubby and I came back from the party, I was going a little overboard with the positive praise. Dominic didn't think it was any big deal. When Lauren came home briefly this past Sunday, I told her about him being by himself. She also thought it was pretty cool and was praising him.  Dominic just finished eighth grade and is moving onto the local high school. Wow, that came fast!! He matured in a lot of ways while in middle school. He grew several inches, he started using deodorant (though the hubby didn't believe me until he took a whiff of Dominic's armpit), I trained him to stay away from the stove (that took a while) and he grew a moustache, just to name a few.

We are working on some other life skills this summer before he starts ninth grade. I know that I will face a lot of resistance because I have waited so long to teach him.  Better late than never! Wish me luck! I'll need it.....

Saturday, June 2, 2018

What It's Like Living with Three Heart Conditions

Back in November of 2011, when I went in to the hospital for a stress test because I was noticing shortness of breath and an irregular heartbeat, I ended up getting a cardiac catheterization. It was determined that I have Non-Ischemic Cardiomyopathy; Left Bundle Branch Block and Congestive Heart Failure. Whenever I tell someone I have those heart "issues," they are usually surprised. I think they pictured someone in their 80's or 90's, bedridden or in a wheelchair and hooked up to oxygen. That's what I originally thought too!! Non-Ischemic Cardiomyopathy according to Healthline is a "disease of the heart not associated with coronary artery disease; it manifests in either mechanical or electrical dysfunction of the heart."  According to WebMD, "normally, the electrical impulse provided by the bundle branch travels down both the right and left bundle branches at the same speed and the ventricle contract at the same time; if there is a block in one of the branches, it's called a bundle branch block; a bundle branch block causes one ventricle to contract just after the other ventricle, reducing the overall efficiency of contraction." Congestive Heart Failure in it's simplest terms "is a chronic condition in which your heart muscle weakens and can't pump enough blood through your body." Sounds complex and a bit overwhelming, doesn't it? It's now been 6 1/2 years since I was given those diagnoses and been on a "low-salt" diet. On the rare occasion I eat something with an "abnormal" amount of salt, like New England Clam Chowder or the skin off the Meijer fried chicken, then I will retain the extra salt for a day or two. My ankles in particular retain the extra fluid and will swell up. I know it will be hard to walk the next morning. The swelling doesn't hurt, it's more like it's a "tight" feeling. I currently take four medications daily: Furosemide, Pravastatin, Metoprolol Succinate and Potassium Chloride. I have never been a "pill" person, but I also know I must take them because it helps me maintain a normal lifestyle. Have you ever heard of an "ejection fraction?" WebMD says, "Ejection fraction is the amount of blood -- given as a percentage -- pumped out of a ventricle during each heartbeat. The ejection fraction evaluates how well the heart is pumping. Normal ejection fractions range from 55% to 65%." Taking my "cocktail" of medications keeps my ejection fraction within the normal range. The Congestive Heart Failure and the Left Bundle Branch Block, I inherited from my mom. The cardiologist isn't sure how I acquired the Non-Ischemic Cardiomyopathy, he told me once there are over 100 different ways it could have been caused. Having three heart conditions doesn't necessary mean I will end up bedridden with an oxygen tube in my nose.  For me, at this time in my life, I'm still able to do pretty much everything I was able to do before I was diagnosed. As long as I continue to take my medications, go to my appointments with my cardiologist and get regular echocardiograms, I plan on being here for a long time!

Monday, May 28, 2018

Explaining "Loss" to Dominic

I first started writing this blog back in July 2011, because the first six months of 2011 were incredibly challenging (lots of personal losses). I needed a way to get out all of the emotions I had been holding in. My husband calls me the "glue that holds our family together." Well, that's sweet, but sometimes glue dries up and starts to "crack" a bit! I have never considered myself a writer (I have a degree in Business).  Anyways, flash forward to April 28 of this year. We had just dropped off my stepson and his wife at their hotel and were driving home from Lauren's college graduation. I was sitting in the back seat and started getting text messages from my brother that my mom was going to the hospital for an infection. The next day she was eating applesauce and was in relatively good spirits. I was totally caught off-guard the next day (Monday) when my brother called me to tell me my mom was gravely ill. My first extinct was to hop on a plane and fly back there. I knew my family would want to be with me, so I made the decision to wait until Tuesday. Unfortunately, she passed away as we were driving back to Maryland. My siblings and our families were able to put together a very nice service on short notice.  I was extremely concerned that Dominic would be so out of his routine that he would start having seizures. He has had nine, the most recent one in March. I made sure Dominic had his "travel" schedule, which is a spiral notebook that is only used for when we travel. I also packed up his other favorite items. He knew my mom who he called, "Grandma Martha," pretty well. Funeral homes are not exactly the best place to have a child, much less a child with Autism, hanging out for hours. I let him go to the very back of the room and play with his favorite items. I asked him three times while we were there if he wanted to go up and see my mom. He told me no and I didn't push the issue. Dominic was very respectful and quiet during the whole day and it was a LONG day. When we got back home to Michigan that Sunday, we settled back into our routines. I like to think of Dominic's brain like a file cabinet. He sees and hears everything that is going on around him, even though it may not seem like it. He "files" things away for later use. When my mother-in-law passed away at the beginning of 2011, we struggled as to how to "explain" that loss to him. We ended up telling him that she was "broken" and we couldn't "fix" her, so she went up to heaven.  In the weeks since we have been home since my mom's passing, I have asked him if he knows where my mom is. He has said, "no," which means he doesn't want to talk about it. Last Monday, I said, "do you know what today is?" I continued to say, "it's Memorial Day, it's a day to remember those who have passed away in wars." He then said, "up in Heaven." Just in the past week, Dominic has been voluntarily telling me that "Grandma Martha" is "up in Heaven." It has taken about a month, but I think he is finally making the "connection."

Tuesday, April 24, 2018

Making an "Impact"

I had someone very close to me ask me this question many years ago, "why do you stay in touch with so many of Dominic's old teachers, therapists, social workers, etc.?" The reason is actually quite simple, every single person that Dominic has met, whether they realize it or not, has made an impact on him. I have said this before and I'll say it again. When you become a parent of a special needs child, it's not like someone hands you a manual and says, "here you go, this has everything you will ever need to know about school, toilet training, puberty, etc.!" It would be great if there was, but unfortunately that's not the way life works. People will make comments and judge knowing absolutely nothing about you, your family or your circumstances. You may lose the friendships of other special needs parents along the way because you don't agree with the treatments they give their children (I have). You will learn to become a HUGE advocate for your child. I had a special needs dad tell me over the weekend at an Autism event I was helping to host, that he knows a family with a 10-year old son with severe, non-verbal Autism. The parents have "given up" on their son. They have no expectations at all for him. I do not know the family personally, so I am in absolutely no position to judge why. I just found it incredibly sad. I hope at some point in their son's future, they change their mind. It can be quite lonely, overwhelming and isolating sometimes on this special needs journey. When we were trying to get Dominic potty-trained there were MANY times I wanted to give up. I knew in the long run it was to Dominic's benefit to be able to use the toilet independently, but oh my, it was SO frustrating!!! He had a teacher (when he was about nine) that would not let me give up and thank goodness he did eventually get potty trained! That teacher had a gigantic impact on our whole family. When we at the beginning of this journey with Dominic, he had a social worker that told me that Dominic during the day at school would recite/script parts of "Barney" videos and other movies or television shows that he had watched. It's Dominic's way of "stimming." It calms him when he is under or over stimulated. His social worker would tell him "stop the movie in your head!" I tell Dominic that when I feel he's spending just a little too much time in his own "world." Again, her words had such an impact on me, that I have used her phrase ever since and probably always will! I could fill up an entire sheet of paper front and back and still not be able to thank every single person that has impacted Dominic's life. Growing up, I was so shy - my second grade teacher even wrote on my report card - "something is wrong with Cathy, she never talks." I almost flunked out of Speech class in college because I was terrified of doing an "extemporaneous" speech! That is certainly not the case now - in the past six months or so, I have been given opportunities to do television interviews. I have stepped out of my "comfort zone" and done them. I am so passionate about helping those "differently-abled" and I feel it is incredibly important to speak for those that can not speak for themselves. I hope in some small way I've made an "impact" in someone else's life.  

Tuesday, March 6, 2018

Hopes and Dreams

At one time, the hubby and I had hopes that Dominic would go to college.  My husband told other people, "I think Dominic will go to college!" As the years have gone by and we have watched him get further and further behind academically, both my husband and I have come to the conclusion that our dream of him going to college will probably not happen. We had a meeting with his teacher early last week about which "path" we thought our son will be heading down this fall when he goes to the local high school.  If this was a meeting about a "typically" developing teen, we would have been discussing the classes he would be taking in ninth grade and college plans. Instead, we discussed him earning a "Certificate of Completion," and continuing to learn basic self-care and life skills. I think in that moment, I realized the dream I had been keeping in my head for all these years was gone. My entire focus, not just parts of it, instead should be on helping him to find those skills he is the best at. Both my husband, Dominic's teacher and I are in agreement that we would love for Dominic to have a job. Legally, in Michigan, he can be in the school system until he is 26, so he is halfway done.  Last week, I told three of my close friends about the meeting with Dominic's teacher.  I have to admit, the first friend I told, I got kind of choked up and could feel myself on the verge of tears. It's one thing to think it, but to verbalize it has been difficult. One thing I've discovered though, the more people I tell, the easier it gets. When Dominic was first diagnosed at 2 1/2 with Autism, I spent two weeks coming to terms with it. I think it is important to go through that process before you can move towards full acceptance. Finally letting go of my dream that Dominic will not be going to college took about a week. Now, it's time to move on!!

Thursday, January 25, 2018

I May Never Know the Reason "Why"

Dominic has been fixated, you really could call it obsessed with calendars for several months. They cover part of our family room floor and if I try to move them or if the hubby, Lauren or I accidentally touch one, he gets upset. He spends hours on the floor looking at them and no matter how many times I try to redirect him to something else, like putting together a puzzle, he will tell me no, every single time. Last week, I asked him to hand me the March 2018 page from our master family calendar. This is what he handed me.    

I asked him where the rest of the calendar was and he brought over a bunch of torn up pieces of paper, handed them to me and said, "fix it." I tried for about a half hour to "reconstruct," the calendar and then realized it was a futile effort. I told Dominic, "there are some things even tape can't fix." I didn't get mad at him because I knew there had to be a reason "why," he ripped up all those pieces of paper. I saw on another mom's blog about a month ago that her son with Autism "hoarded," items. When I think of hoarding, I picture rooms filled with so many things that you have to crawl over piles to get from room to room, not a pile of torn up pieces of our March calendar that currently reside under our family room couch. I know basically nothing about hoarding and "why," children with Autism do it. When Dominic went to his private speech therapist this past Saturday, I told her about what was going with the calendar and the pieces of paper. I then asked her if she had ever heard of children with Autism doing that type of thing. Her response back was yes. My next question was why. She told me it's a way to cope with stress and anxiety.  Hmm, okay. When I have watched the shows on television about individuals that hoard, it makes no sense to the people coming in to help clean up the piles, but it makes total sense to the person that hoards.  I asked Dominic several times tonight if I could toss all the pieces of ripped up paper that are under the couch into the trash. He told me no. I asked him if he could tell me why. He told me no. Do I really need to know why? No.  Does his hoarding bring him comfort? Yes. Then, who am I to question "why" he does it?

Saturday, December 23, 2017

Thanks for Going the Extra Mile

Two weeks ago, I helped host a Special Needs Holiday Party.  I had Santa and Nana Claus lined up to make their appearance about 3 p.m. I had told Dominic that they were coming ahead of time, but since I have never taken him in the past to see them, I was a little apprehensive how he would act.  I took Lauren to see Santa a handful of times when she was little, but I guess I thought that Dominic wouldn't be able to handle it, so I never even attempted it. When Santa and Nana arrived, I went over to them and introduced myself because I had never met them in person, we had only corresponded by e-mail. They were so sweet and were circulating around the tables talking to everybody. When Dominic saw them, he decided to get as far as he could away from them. We had a large group and there were many that wanted to sit on Santa's lap. I was busy taking pictures and every so often, I would look over and Dominic was still on the other side of the room. I explained to Santa that I didn't want to push Dominic too much to sit on his lap because when he's really stressed he is more prone to seizures. As the party started to wind down, Nana Claus was able to coax Dominic over to where she and Santa were. She put a chair about 10 feet in front of them and got Dominic to sit down. The whole time she was explaining what she was doing. She and Santa were finally able to get just a few feet behind Dominic and I was able to get a picture!

Santa and Nana Claus, thanks so much for going the extra mile and being so patient with Dominic. It meant so much to me!!

Thursday, December 7, 2017

I'm Proud of You, Dad

Back at least two months ago, my dad asked me a question. He LOVES history and as much as he's tried to get me interested, I'm just NOT. He has been at his assisted living facility back in Maryland for a while now. It's been hard on him at times, because he moved out of the family home where he had lived for several decades. Anyways, you're probably wondering what the question was, right?? Well, he asked me something like, "something very important happened on December 7th, it's Pearl Harbor Day." He went on to say that he was thinking of giving a talk to the other residents about that day. This would involve him going to the activities coordinator and getting him on the monthly "schedule." He asked me my opinion of what he wanted to do. Without hesitation, I said, "YOLO." He asked me what that meant. I told him "you only live once!" My dad and I have had lots of talks this year about the stroke he had a few years ago and me getting diagnosed with Malignant Melanoma in January. When you are faced with your own potential mortality, it can't help but change you. I think when you go through that type of experience, you either become angry or you are grateful for each day. My dad and I fall into the latter category. Two days from now will be my 22nd wedding anniversary. The morning of my wedding day, December 9, 1995, I spent the night at my parents house. I couldn't sleep, so I went downstairs. My dad joined me and he and I chatted for a while before everyone else got up. He told me recently that he was thinking of that morning and how much it meant to him. Guess what dad, it meant a lot to me too!

My dad will be 83 in March. I know that I won't have him or my mom forever. The talk is at 2 p.m. today and I so wish I could be there. A few weeks ago, he did the next best thing, he read it to me over the phone. Since his stroke, he talks slower, but that's fine. I have to say, his talk was really interesting! He stopped every so often and said "you're probably bored." I told him I wasn't . When he got done, I told him that I was proud of him. It took a lot for him to go out of his "comfort zone," and I recognize that.   Last night, I wished him good luck. I know that my dad will do great and I can't wait to hear all about it when I talk to him tonight!! I love you dad.

Thursday, November 30, 2017

It's Never "Okay"

It seems like almost daily, another man is accused of sexual harassment, etc. I can't even keep track of it. It's like a lid has been pulled off a boiling pot and all the men accused are spilling out. What would have happened if all that stuff hadn't come out about Harvey Weinstein? How long would have all those men been kept in the "boiling pot?" I think the individuals coming forward are very brave and it makes me sad that they felt their voices were not heard for so long or that they kept it inside for years and sometimes decades. I told my dad recently about my "#MeToo" moment. I thought I had told him before, but evidently I hadn't. Anyways, in the late 1980's into the early 1990's I worked for a very small company as a receptionist. I was told by the owner of the company I had to always wear panty hose and a skirt/dress. I did it because I liked the job and the people I worked with. After I had been there a few years, the owner hired an older gentleman. He was easily three times my age. On more than one occasion, he made comments about my figure and how I looked in my clothes. It made me more than a little uncomfortable and I talked to the owner of the company privately. His response, "if you take him to court, I would be on his side." I can still remember his words this many years later. When I finished telling my dad the whole story he said something along the lines of, "I can't say that I'm surprised, that's the way it was back then." Excuse me?? It's never okay for that type of thing to be going on in the workplace. My experience sounds tame compared to the stories I've seen and heard in the news. After I moved on from that job, I took a night class at the local college. I had a professor that would come and stand behind me just a little bit too close. This happened so many times that I eventually dropped the class. I had passed the point of being able to get a refund, but I had to get out of the class for my own mental well being. I had actually forgot about that professor until all of these stories starting coming out in the news. Many of the accused men claim they are "sorry." Are they really sincere or are they "sorry" they got caught???? Time will tell.

Thursday, November 9, 2017

The "Ladies"

Dominic has been going to music therapy for a while at the Michigan State University Community Music School. During his half hour session, I sit in the lobby area along with other parents/caregivers.  There are a handful of tables and chairs and most people either read, use their computers and/or chat with the others at their table. Each Wednesday afternoon, when I came into the lobby, I noticed a table of  four ladies all older than me, chit chatting. They seemed to know each other VERY well. They all had special needs adult children/grandchildren that were also participating in music therapy. I would overhear them talking about topics that I was very interested in, but all the chairs were taken and I didn't want to be nosy, pull up a chair and just plop myself down and interrupt. One day about a year or so ago, one of the ladies didn't show up, so there was an empty seat. I had been bringing my sheet of disability ministry events and knew at some point, I would go over and talk to them. This was my opportunity and I grabbed it! I went over and sat down and told them about the ministry. They were the nicest, sweetest and kindest women! Over the past year, I have gotten to know the three ladies and we have shared so much with each other. When I told them about my Cancer in January, they prayed for me. When one of the ladies and her daughter needed a ride home from a recent doctor appointment, I helped her out. This trio of ladies have become like Dominic's "surrogate," grandmas. They have become my friends. It has been an incredibly eye-opening experience to listen to the ladies talk about their experiences as caregivers. The half hour goes by very quickly and usually I'm not done yakking when Dominic is finished!!! Last week, I didn't bring Dominic to music therapy because I didn't feel well. Yesterday, the ladies were all asking where I was. It's nice to be missed!!!

My New "Relationship" with the Sun

Long gone are the days that I would sit on the beaches of the Atlantic Ocean for HOURS at a time with just baby oil on my skin for prote...