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Saturday, October 22, 2016


As the world gets more and more used to "our special kids" growing up in it, my dream is for comfort. It may not be a word you would immediately think of, but it is one I can see or not see when you interact with my Teale. I have joked much over the last few years about Teale being my "bar buddy." You see, my husband works for the state by day, but at night he is a musician. He can be seen  playing in several bands in our community. Music is his passion, but at this point in our life, it can't support our family. Mark has been able to balance a full time job & his music, which also helps to make ends meet. For years he was on hiatus from the music scene, life was too busy with work and family to pursue his passion. He still practiced his sax much & kept his chops, but didn't play as many gigs as he does now. When Mark started picking up more and more public gigs, I would go, getting sitters for the girls. It was my time, friends would meet me & it was a great break from the everyday. In my life, sitters aren't always easy to find. It takes a special person to be willing and able to be with Teale. She can be moody & explosive. Not "getting her" or reading her cues can create a situation that may be difficult to turn around. There are few people I trust to be alone with my "kids." One gig, when I couldn't get one of those brave souls, I decided to take Teale with me. It was a bar he had played much, there was food & I decided I would just buy Teale dinner. She could eat & hang with my friends & I, plus we'd get to see her Dad play. If it didn't go well, I could just leave. It was worth the try anyway, after all, what did I have to lose? Well, it's been over a year since I took that step & now Teale is my "bar buddy." If the gig is early enough & they serve food, Teale just comes with me. She loves the experience, my friends are all fabulous with her & I still get to see Mark perform. It's a win, win in many ways. I have always felt like every experience helps Teale to grow. Social experiences are especially important. Her learning to be in public at her Dad's band, has more lessons than I could express. She's learning restraint, not bugging her Dad while he's on stage. She's learning how to have give and take conversations with my friends. She's learned how to maneuver through crowds of people who don't know her "special needs." So many skills are taught by the experiences we "give" our kids. For Mark and I, we've always pushed to have Teale be a part of the community and not kept her isolated. It's risky and we've failed much, but the times it works are more important. Teale is able, just by living her challenges publicly, to teach compassion. Comfort is my goal, I want people of all walks of life to be comfortable with my severely developmentally delayed daughter. By taking her to events, where you generally would not be exposed to this population, we are teaching "comfort." Teale is the best "life teacher" I've had. I love that Mark & I have the same visions for her. I love that we have decided the rest of the world needs to get used to her being part of society. Many families isolate & protect their special needs family members from the world. I understand why, I've had many of those moments when someone has broken my heart by not caring or showing understanding, but without exposure, people don't get comfortable. So even though we are only one family, I think we can help educate, by just living in as typical way as possible. Teale will probably be my "bar buddy" for many years to come, here's hoping she teaches "comfort" to many. 

Thursday, October 13, 2016

Finding Light in the Dark

The tough times have somehow always strengthened Mark and my relationship. I've never understood the "key to our success." I just go with the Blessing that it is.
A few weeks ago I struggled with illness, but I'm stubborn and a bit pigheaded too. I hate to be controlled by circumstances and often won't give in to such. Waking up, I knew immediately I was in trouble. The room was spinning and I was nauseous. No, I had not had "too much fun" the night before. Mark and I had been out on an unusual night date with another couple, but two glasses of wine in a four hour period should not make me spin! Anyway, it was quickly apparent I was in Vertigo and needed help ASAP. The vomiting was violent and I couldn't get control of my emotions on top of it. So much pain and confusion ran through me. The spinning was fast, like being on a small carousal going in double time. Mark called my PCP who directed us to urgent care. The thought of getting in a car was far too much for me though, so I refused, instead asking Mark for a nausea medicine I take when I'm in migraines. That wasn't kicking in though and the vomiting was just too much. So I finally agreed to let Mark help me to get dressed to go to Urgent Care. The three of us went, with no care for Teale, it was the best solution. As we drove the nausea increased and I sobbed, poor Teale couldn't stand seeing me like that and was begging her Dad to do something for me. Moments like that, when looking back, give me much pride. Teale is compassionate and has learned to care outside herself. This is a skill we never knew if she would be capable of and it still blows me away every time she displays such compassion.
By the time we hit Urgent Care the medicine had kicked in and I was doing better. They really didn't help me, but luckily I had inadvertently helped myself a lot. The nausea medicine I had taken was in the same class of medicines they prescribe for Vertigo. They did give me a shot for pain and another for nausea, saying I should go to the hospital for an MRI. I refused, just wanting to go home. I slept off the afternoon and woke Monday, not a hundred percent, but better. Pushing through and starting my week normally, I had much to accomplish. By afternoon I was struggling again, but both Tuesday and Wednesday I would push through. I had much gardening work to accomplish for friends and deadlines to meet. I'm not one who handles disappointing others well, so I got what I wanted to get done, done. Unfortunately, I also paid a price for it. My body was revolting and the dizziness and headache were back. Thursday morning I couldn't drive Teale to her nephrology appointment and Mark had to take the day off. He was done watching me struggle and vowed to get to the bottom of it. Mark is my hero, when things aren't right, this gentle giant will move mountains for me. He took Teale to her appointment and arraigned a doctor appointment for me. My girlfriend was my chauffeur until he could get to me. The doctor diagnosed vertigo with a migraine. She said the vertigo had either brought on a migraine or it actually was part of a migraine? She also concluded I was having a bad reaction to the medication that commonly controls vertigo and I had been taking all week per Urgent Care's instruction. Just to be sure, my dr ordered blood work and an MRI with and without contrast. She gave me a script for Valium to relax me and help me sleep, plus set me up with a PT to have The Eply Maneuver performed on me. The mystery would get solved, come hell or high water. Mark would take the next day off to get me to appointments and care for me. He would take on the kids, the house and all that that entails, while I healed. He would get further and further behind at his job, but tell me it didn't matter and that I was his priority. This is where we shine. We care for each other and get each other through every glitch life throws us.
I would come out of my illness with knowledge and understanding. I would know nothing serious was wrong with my health and how to deal, if there was a next time. It was just a glitch, a moment in our life together as partners.
Another chance to strengthen us for the next challenge and so on and so forth. Blessings are easy to see in the light, but when you discover the Blessings in the darkness, your whole world brightens. 

If Only

If only you could see yourself through my eyes
You would see, strength, courage, intelligence
If you could see inside my heart,
You would know love, compassion, understanding
If you could see the future
You would know this moment will pass
If you knew your own power
You would be amazed by what it can accomplish
If you saw what others see
You would see beauty, talent, depth
You are the one who controls your destiny
You are capable of all you want
You just need to want it

Saturday, October 1, 2016


A week ago I was asked to share some of our story, as a family, raising a daughter with Special Needs. It was very difficult to condense all I would want to share with this class of students at a local private college. The class was small and therefore a very intimate setting. I sat in front and just told highlights of life with our daughter, Teale, the good, the bad and the very ugly. There was much I missed and or skipped over, because, as it was, I went far over the time allotted. The "kids" got an earful that night and my hope is that they learned much about how families like mine really live. Our challenges are many and often, they are constant. 
I am sharing their reflections to help me to remember:

                We can't be ashamed to tell our stories,     they could be the key to someone else's success.

I've waited a few days to post on the blog because after class I was left speechless. I was blown away at Ellie's compassion, and her resilience to make sure Teale has everything she needs and is happy. When she spoke of her family and everything they have been through, it gives me so much hope. The strength this woman has, and her will to never give up is absolutely inspiring. I checked out her blog "We Are God's Entertainment" where I read some more stories about their family and I'm still struggling to explain how amazing and how genuine this family must be. 
   I have not personally seen a severe seizure take place, however my older brother has had his share of rages and outbursts, and I have felt the gaze of people looking at our family when we are in public, but as Ellie said quite well, it is almost always overshadowed with kindness and support. After hearing some statistics of parents with special needs, I'm so glad that there are families that do not follow them, never knowing this statistic I am also grateful that my own family is still together and happy, and now learning of more and more families that are the same, I'm not quite sure how to put it but it truly is incredible the bonds people can form and maintain despite the challenges having a special needs child may bring.
  I have so much respect for Ellie and her family, and hearing about their trouble with some school systems really encourages me to do everything I can to help students with particular needs, because each student deserves the best efforts from their teachers, and letting them down just doesn't seem like an option. 
Again, I am so grateful for have the chance to listen to Ellie, and even after trying to type this out and put my thoughts into words, there's still a part of me that feels like I can't quite capture it. 

Listening to Ellie Bradley share her experiences with us was certainly powerful and moving. Through the presentation I went through a whirlwind of emotions, and after class I really had to sit down and let my mind process everything. Something I found particularly powerful was that we were told the story starting before Teale was born and everything Ellie went through up to the present. A really emotional part for me was when Ellie was talking about having to train her kids go to a safe room if things ever got out of hand. It is no doubt that having a child who has special needs is a lot of work, but this example told by Ellie really illuminated just how crazy things were. And for her children to have to go through that as well must be extremely difficult. I checked out her blog, “We Are God’s Entertainment” and I really love reading her posts. By the time class ended I really just wanted to keep hearing about her experiences, and now I can read them! I find writing this blog really challenging, I just feel like my words are not evocative enough to do Ellie’s presentation/this topic justice, even so Ellie’s presentation was so moving and really eye opening for me about just how extreme the lives of the parents/caretakers of children with special needs can be.

Hearing what Ellie had to say was pretty earth-shattering and eye-opening. We all know that these issues go on in our world, whether it be learning disabilities, mental disabilities, and physical disabilities. But when we hear personal stories from someone who has been extremely affected by such things, it really grabs your attention. I think I cried once! It was when she was talking about her son, Beau, and how he stepped up to the plate to advocate for his sister, which ultimately changed things in their lives drastically. Her words really stuck with me, and made me feel for all the crazy things that she has had to endure in the past seventeen years. When she was talking, I made a lot of connections in my mind of her and Debra Chwast, Seth's mom. They are similar in the way they advocate and care so deeply for their child. Overall, I am very glad we got to hear from Ellie, and I wish we had more time to listen to her!

I am just loving this class! the speaker last night was amazing, I immediately wanted to be apart of their life (in a professional way). I have such a big passion for special education and the arts. I think that is why I felt so passionate about her story as well. What really stuck with me was how strong of a woman Ellie was and is. My day at BOCES (6hrs) is a very long and stressful day, so I can understand at least some of her exhaustion. She spoke about her daughter and her life with such power- I loved it. She did admit how hard time could be, but never gave up. Her and her family stuck together and did everything they could to help each other out- you really don't hear that too often. I was also blown away by the school district giving them such a hard time about their daughter leaving. Schools, teachers, and principles are in that profession for a reason.. to help students. It took her 16 year old brother to break down in front of adults for them to listen, I cannot believe that. I hope I am never apart of such a situation, as a teacher I would have fought with them and their daughter. Ellie and her family are truly special, I appreciate her coming in and tell us her story- I don't think she knows how touching and inspirational it was. I honestly think that she should write a book about her experience or even go around being a speaker, she could help many people and families! 

I found our speaker tonight to be incredibly moving and inspiring.  My mom has always worked with students with disabilities, from minor, to extremely severe.  So I have been around kids with intense needs before, but that hasn't necessarily made me comfortable with how to act in scary situations when medical needs arise.  I was helping out at a Christmas party once, at my mom's school, and a girl started having a seizure, and I was quite young, but I remember feeling very scared and helpless because I didn't know what to do, even though trained people were there to help.  I have often wondered since then what I would do if I was the parent of a child with these kinds of needs.  The panic I felt would never equal that if I was the mother, or sister, of someone going through that kind of trauma.  However, after hearing Ellie speak, I feel incredibly moved and inspired.  She exhibited such strength that I was in awe of her ability to care for herself and her family.  I was stunned that doctors pushed her to have an abortion, possibly because of my personal beliefs, and have so much respect for her holding her ground from that point, on to every time she had to advocate for herself, and her family.  She truly had to fight to provide the best possible resources for her daughter, which was heartbreaking but inspirational at once.
I also found hearing about her family life to be incredibly comforting.  It gave me a glimpse into what it's really like to have an intimate relationship with a person who has special needs.  I was so grateful to have heard her share what goes on behind closed doors, so candidly.  The team her and her husband make gave me so much hope, after hearing the statistics on how these situations can affect relationships.  It was such a testament to their love and resilience.  I also loved to hear what it was like for Teal's siblings.  The two perspectives were so raw and genuine, that I felt truly moved by each of them.  I am trying to imagine myself in their shoes, and have a deep respect for what they each must feel.  

Overall, I am so grateful to have heard her story both as a future educator, and as a human being.  I feel better equipped to deal with my own insecurities about interacting with people different than myself, and with my ability to provide for such students in my classroom.  I never want to be the teacher to let a student and her family down, as Ellie experienced.  I feel more determined and capable as a result of her talking with us, and am honored to have heard her.

Monday, September 26, 2016

I Forget...

Writing escapes me from time, to time. I forget how much it centers me. I forget how much it helps me feel at peace. I forget how much I get from putting words to problems down, instead of just letting them fester in my head. I forget how much I will appreciate remembering a small moment in our life, long after it's gone. I forget how sharing, may help others to learn. I forget that taking time for me helps my family. I forget that I enjoy writing.
So here I am, with not much & way too much swimming in my head.
Last week I shared "our story" with a class at Nazareth College. The class was made up of college kids pursuing Special Education. My friend, who teaches the class, had asked me to share some of our journey, as a family, raising a daughter with multiple special needs.
Trying to condense the journey would be tough. I would talk too long & leave, knowing I hadn't shared all I hoped to.
My note card quietly folded away in my purse. I had decided to just go with my heart. I've always believed sharing would help someone, somehow, someday... When we are open, we possibly help others to find the easier path. We help teach understanding & compassion. When we share our stories we bring people together & we don't feel so alone.
So to the "kids" at Naz, I want to thank you for listening. I hope someday when you are teaching a child like my daughter, you remember that behind that child, there is a family. There is a history of pain & joy that got them to where they are. There are people who probably didn't choose this path, but walk proudly anyway. Please walk with us, not against us. We need you to believe in our children and we need you to believe in us. 

Monday, March 7, 2016

Wegmans, Not Just a Grocery Store

Published in our local newspaper, The Democrat & Chronicle, in celebration of Wegman's 100th Anniversary

Several years ago I wrote a letter to the editor about an impatient shopper at Wegmans. The person had not been impatient with me, but with my multiply disabled daughter. My daughter, Teale, has many hidden and not so hidden issues from a severe birth injury. Wegmans is one of her most favorite places to go and can often help her turn her mood around. Back when I wrote the letter to the editor, Teale was about 5 years old and her disabilities were less obvious. Teale is now 17 years old, but she still loves Wegmans. Almost every Saturday morning you can see her and her best friend, my husband, her Dad, Mark, at Pittsford Wegmans. They are a sight to see. Mark is one of the sweetest, most patient Dad's there is. He works a full time job durning the day and many nights he can be seen playing his sax or singing in local bands. But even if he was out the night before playing music into the wee hours, Teale still gets him for her Saturday morning trip to Wegmans. She will wake up extra early on Saturday, excited to get her day going with her Dad. I've often joked that the regulars at Wegmans on a Saturday morning must think he is a weekend Dad. Maybe they think he is divorced and out with his daughter for his weekly visit but in reality, Mark is an everyday Dad. He is very present in our lives, maybe especially when it comes to Teale. Wegmans has been a huge part of their bonding, it is their thing, a special time our daughter counts on every week. Sometimes you will see her with an American Girl doll in hand, kinda a strange sight, as she is about 5'6" tall. Often, Mark tells me, they see many of the same people, who, with knowing smiles, nod Mark & Teale's way. Wegmans has many routine based people, who, like Mark & Teale, come every week about the same time. Most weeks they start the shopping trip with a bagel together upstairs before doing the grocery shopping. They even go to the same cashier, Corie, who Teale is very fond of. The weeks Corie isn't working, Teale is disappointed and comes home telling me, "No Corie today." Whether she knows it or not, Corie is part of our "circle." She a person who understands our Teale and treats her with care and respect. Then there are the pharmacists and staff at the pharmacy. There is truly not enough good I can say about them. They are kind, compassionate and extremely caring. They may not know Teale's whole story, but they know she is on a lot of medicine and that we struggle at times. Teale has had many not so pretty moments at Wegmans. She has raged in the aisles, in the produce, at the customer service desk and in the parking lot. Teale has also laughed, touched peoples hearts and brought complete strangers to say kind things to us. We have been judged and some have thought she was just a bratty kid in a rage, but as we live this life with Teale, we are far more often surrounded by love and Wegmans has given us some of the best stories, good and bad. One I hold onto many years after it happened involved Teale in a horrible rage, still small enough that Mark could scoop her up, but not without a huge scene. He had her on his shoulders just trying to get out as fast as he could. I was there also, with our youngest daughter, Gwenn in tow. It was like the buzz of Wegmans had stopped and all eyes were on us. I stepped away with Gwenn, just hoping to get out "alive." As I stood in the produce area, near the exit, Gwenn by my side, an older woman walked up to me. I held my breathe...This woman had kind eyes, full of understanding and compassion. All she said was "Hold your head high Dear, you are doing a wonderful job." To this day I wish I could find her, her kind words still bring tears to my eyes. Wegmans may just be a grocery store to some, but for our family, it has been a place where some of life's biggest lessons have been learned & maybe a few have been taught.  

Tuesday, January 12, 2016

Soul Searching

I think I'm a very secure person in my relationship with my husband. He treats me well and I've never had cause for thinking he is not loyal to me. 
So my deep feelings around his removal of his Wedding bands for gigs has kinda shocked me. (Mark wears one on each hand. His right hand is his original, plain gold band from our Wedding. On his left hand is a ring I designed for him with a diamond from a friend. I gave it to him on our five year Wedding Anniversary. On our 25th Wedding Anniversary that ring was finally Blessed at our renewal of vows ceremony.)
Last night was not the first time he has removed his bands for a gig, saying it messes up his bongo/percussion playing. It also wasn't the first time I've wondered why it bothered me so. After all, I KNOW our marriage is strong and not based on wearing of rings or not. 
So when Mark questioned me and I had no logical response, I thought, I'm going to pray on this. Before I fell asleep last night I asked for understanding, for the "why" his taking off his Wedding bands bothered me deep within my core. When I woke this morning I had an answer. The answer rocked me, but made sense. I've had strong reactions like this before, in totally different situations, but again, the reason was the same. 
I was a young girl who adored her Father, some of the good memories are very clear; ice fishing, walks in parks, picnics, Honeoye Lake at my Grandparents place, Menlo Place and my Grandparents... Lots of memories flood my mind when I think of my Dad, but sadly one thing has challenged me the most, his affair on my Mom. 
I don't know the truth of that time, heck, I was just a kid and hardly know what their relationship was, the good or the bad.
I do know I was exposed to much a child probably should never have heard or seen. One of my most vivid memories has always caused me pause.
I was on a date with my Dad, just him and I going to a park for a picnic, or so I thought. We would "run into" a friend of his, a woman much younger than my Dad. She would be very sweet and as a young girl, I would enjoy the kindness and attention she showered on me. It wouldn't be until I told my Mom about the nice lady Dad and I saw at the playground that I would kinda catch on. 
I'm not sure if this will make sense to anyone, but in watching the demise of my parents relationship, I had a lot of guilt. As a little girl I thought somehow I had caused it, by telling my Mom about Dad's friend. One day far after the picnic my Dad married that "nice lady" from the park. 
I forever would juggle enjoying her company and not hurting my Mom's feelings, by pretending to not like her. It was very complicated... 
So back to my story, I believe my Dad's taking off of his Wedding ring to my Mom was a very traumatic event in my life. I think it was a deep, unresolved time when I realized my parents were breaking up. My Father's naked hand was the start of it all, at least to a little girl who didn't understand the complications of a marriage. 
Mark will tell you, I get very needy every time someone around us breaks up. I will ask him more than my usual for reassurance that we are ok and then eventually, with time and his patience, I go back to "my normal."
I have done much soul searching and I have gotten much counseling over these feelings. My Father died without Mark even meeting him. We had been married a few years when my Dad passed, but he had been struggling many years with mental illness and alcoholism, so for my own sake, I had stepped away. His death was hard on me though. I had much guilt that I should have helped him. I had to face those demons that had caused me to walk away from my Dad. I had to feel the pain that I wasn't going to ever get that "second chance" that I had counted on and I had to move forward. I worked hard at this, but obviously, I am not completely "cured" from this huge loss in my life or from the betrayal I witnessed.
Mark taking off his Wedding rings is not a big deal, but apparently it brings up a deep and sad memory for me, making it a big deal to me.

So for that, Mark, bear with me, I'm still trying to get used to the fact that you love me unconditionally, rings or not! XOXOXO