Valentine's Dinner Date

Last night was a rough night, to say the least. 

We drove Southeast of Syracuse to a attend a Valentine Dinner put on by David’s Refuge. Volunteers there watch our special and typical “kids” while the parents get treated to a date night with other special needs families and a dinner. It was a long drive for us to risk Teale’s behavior, but we decided to try. We had heard such nice things about the experience from other families. The kids basically get spoiled. They have a terrific time with hundreds of kind volunteers, who have set up an indoor carnival. Teale loves being with typical teens and it sounded like there were plenty of sweet people volunteering, so we were hopeful she’d have a great time. 

Unfortunately it was a way too early morning for Teale. Her moods have been rough for weeks and waking early has been a huge contributing issue. Then add in the fact, we were trying to teach her about appropriate behavior on her weekly Wegmans trips with Mark. She’d had several weeks of very crabby behaviors at Wegmans, growling at Mark and at friend’s he would bump into there. We needed to change the dynamics of her controlling the situation. We decided last week to emphasize she was not the one in control, by not allowing her to go this week. Picking to have her stay home from her beloved trip to Wegmans on the same day as something new, looking back, may not have been a good decision? She had a small rage after we told her she would not be going, so, I occupied her as Mark and Gwenn snuck out the door. Her acceptance that Mark had left seemed hopeful. We'd be able to use this example in future weeks, but occupying her without errands would make for a long day. I decided to do Teale’s hair in curlers, to kill some time. She had gotten the curlers for Christmas and she loved the look, but patience while her hair dried was tough. We weren’t yet telling her about our special night planned. Telling her too early starts the questions and the anxiety, so we’ve learned to tell Teale special plans very last minute. As I did her hair, the questions started, why are we doing her hair, who will like it, who will see it, over and over... I then made, what I think was, my second mistake leading up to our night out. About noon, with hours to go before we had to leave, I told, her about the fun night she would be attending. Teale's anxiety over where we were going, what she'd do, who she'd be with, etc., was horrible, from that moment on. It was especially difficult since we couldn't answer her unending questions without ever attending this event before. Teale unable to accept the answer, "we don't know." She would waffle between excited and anxious all day, what we classically call, "a roller coaster day." We just couldn’t seem to get her soul comfortable. 

Our hope was that Teale would sleep on the way to the event, the drive was over two hours. She generally falls asleep fast in the car, even short rides at approximately mid afternoon often causes her to dose. We were sure she'd feel better after the drive and the evening would be fine. Well, she did not fall asleep, she just switched the radio and asked questions, constantly. It was an exhausting trip and completely worrisome. Now how would the evening go? The event started at 5:30pm and with her already being up over twelve hours, how would she be? If we had stayed home, she surely would have been in bed by 6:30pm. The nightmare of this day would have ended early, giving Mark and I time to recover. All the mistakes of the day were spinning in my head. We stopped at a Wegmans near the event to get her dinner and decided we might as well let her have caffeine to boost her and get her through the event, this was possibly our third mistake. Teale had started liking a cup of coffee in the mornings with me, so she had coffee at about 5:30pm. It was a desperate measure, just hoping to salvage the evening, after such an exhausting day and long drive. Every fiber of my soul was spent and worried, I just couldn't believe she hadn't slept on the drive and her questions about the event were increasing in intensity. Our responses not helping her, at this point. All I can think about is that this date was one of my worst ideas ever! I was filled with frustration and guilt that I had ruined our day. My agitation increased with Teale's. I was starting to think, turning around and going home was the best idea. We could put her to bed and salvage the rest of the night at home. Mark was frustrated with me, rightfully so, but if you tell someone who is upset to calm down, well, it's not going to help them to calm. Mark made that mistake! I knew I had pushed for this date, so I already felt awful, his being frustrated by my feelings, made it worse. I was on the verge of tears. So when we couldn't find the building and Teale's anxiety increased more, I knew I was feeling fragile. We tried to find the building where the kids event was, but then gave up and went to the building we figured our event was at. I tried to quickly go inside alone and find out where the kids were, before Teale got out of the car. She was in a hurry, so finding out we had to get back into the car and go somewhere else didn't make her happy. We found the correct building easily this time with directions from the people at the adult event. The church that hosts this event actually has two buildings close to each other. Getting out of the car, Teale started melting down. Now she knew we weren't going to be in the same building with her. Processing for Teale is slow, her head was spinning and questions were being bombarded at us. We weren't answering "correctly." At this point, I'm sure getting back in the car is our best option, but we had come so far... We get inside and the people greeting us couldn't be any nicer, but Teale is escalating. She starts yelling, walking away a bit, we know we now need space and time. We are already late for the 6pm dinner, as Teale gets louder and more unpredictable. The volunteers try to help, pushing in, trying to calm Teale with reasoning and touching. Both of which are not helpful when Teale is escalating. We need space and time, period. Mark goes to talk to volunteers after Teale has crumpled up her name tag and wants it fixed. He gives them our basic survival guide, that touching doesn't help Teale and actually escalades her, plus we just need to deal with her alone. During that short time he is away, I stood near Teale, but not too close. She suddenly lunges at me and smacks me hard in the face. With absolutely no reaction, I looked around the room, realizing many people had seen her smack me. A few, in total shock, mouthed to me, "are you ok?" At this point, I'm fried and embarrassed, I just want to go home. Mark comes back over and talks Teale into going outside to calm down. It's cold, he's only in a blazer, Teale already had her coat off, but we stood outside while Teale raged. It was brutal, getting in the car wasn't a viable option either, she was actually wanting to go back in to the event, but she could not calm. Getting in a car would be very dangerous, so in the cold, we waited her out. The volunteers came out to check on us and Mark, politely, asked them to go back inside. The presence of others, often makes things worse. We waited and waited, but calm wasn't, coming...

I was freezing, so Mark told me to go to our car, there, all my emotions finally came out. I was balling, totally frustrated, angry, guilty feeling that I had suggested this date, that I had made mistakes all day, that probably brought on this moment. I just wanted to go home. Texting between a couple we were supposed to meet at the dinner and my sister in law, seemed to both help me and cause my emotions to spill over. Showing emotions in front of Teale causes her's to rise, so I often remain stoic. It had been a long day of disappointments and I was worn. I had so much built up frustration, weeks of questioning why Teale has been off. We'd seen her pediatrician several times, hoping it was something simple like an ear  infection. We had seen an ENT who diagnosed TMJ. This possibly why she's waking so early and seems to have more headaches. We saw her psychiatrist to increase her antipsychotic earlier this week and we felt hopeful that did help, until yesterday. I was a mess, sobbing in the car, having a pity party for myself. I was worn and feeling like, even in the community we are supposed to feel comfortable in, we stand out. It was heartbreaking Teale was so uncomfortable in her own skin. I watched as Mark kept trying, as volunteers came to him again and again. It was freezing out, rain had started, an hour or so had passed. Teale's beautiful hairdo was ruined, her dress damp, she must have been frozen, totally worn and Mark too. He didn't want me helping, probably, at least partially, because he blamed me. I had made many mistakes all day that lead up to this. Walking into the dinner over an hour late, with bloodshot eyes was very unappealing. So even if he did finally succeed, could I pull it together? I watched Teale go after Mark, luckily with his height and strength, he could get away. Finally, they were out of sight and I was hopeful they had gone inside, but then I heard her again. An hour or so later and she was still sounding "on fire." Mark was walking toward me and I thought, good, we are going home! A guy was with him and another approached, I could hear the conversation, something about going in the back. The cold rain coming down more, I wished he had just gotten in the car. Fairly quickly, Mark came running back to the car, it had worked and he had left Teale happy. We drove to the dinner, me still apprehensive because I knew what they had witnessed and my own emotions were so raw.  We walked in and I asked for the bathroom first thing. Staring in the mirror, my eyes blood shot, I worried about what others would think? Mark was getting a glass of wine when I came out, but they had run out of white wine, so I passed. Red wine can cause me migraines and at that moment, I already knew I was at risk. As we tried to compose ourselves before walking in, Mark must have said something that triggered me. I could no longer hold it together. I was overcome with emotions and sobbing in Mark's arms, my face still hurt from Teale smacking me and I was just very sad. The whole day had been a huge disappointment. Mark had dealt with Teale over an hour and now I'm sobbing on him, good Lord... He suggested we just go to a bar, but then again, friends were there. I eventually pulled myself together, went back into the bathroom again to touch up my running face. Friends surrounded us, big hugs from all and we sat down for dinner. I probably wasn't the best of company, but we stayed. Mark even got picture texts of Teale having a great time. We had an hour or so to be with our tribe, meeting other special needs families that get this kind of thing is always nice. We went to get Teale and people flocked us, saying how great she was and how much fun she had had. Often after a big rage, Teale is especially even, like the release of the rage, resets her. 
I went to find her and was treated with that beautiful smile and a loud, happy "Mom!" At that moment I was able to see God again. The people who had been assigned to Teale, raved about how much fun she was. I could barely talk, tears still so close to the edge of my eyes, I knew speaking would flood me with emotion again. I thought about how incredible it was that she was so very happy and the people with her, seemed like angels on earth. They could not have been any more kind and generous. The night had been so very tough, but God was still with us and as I tried to thank them, the tears came again. Not out of sadness though, but because, in the end, Teale taught grace and love to more strangers. If I had to bet, there are probably many volunteers still talking about Teale today. They may be wondering how we live what we do. I wonder that a lot too, but I also wonder how I ever lived without Teale? As we left the event, Teale told us about throwing balls, making her bears and especially the nice people she had been with. It was sweet, but in a bittersweet way, if only drop off had gone more smoothly. Ironically, as we headed to the car, Teale asked when she could come back. God sure is funny....

Girlfriend

Tonight is a fun night for Teale and myself. We invited a friend of her's to see one of Mark's band's perform. To many, this may not seem like a big deal, after all, Teale is 19 years old and Mark plays out a lot in several bands. But for Teale and I, it is a very special night. In her free time, she has been mostly isolated from peers, much of her life. Not for lack of trying on Mark and my part, but just because the population Teale is a part of, is often too overwhelmed to socialize. Sadly, Mark and I are Teale's entertainment, basically anytime outside of her programs. There are many factors that make connecting very difficult in Teale's world. Kids come from all over to attend her programs, so peers may not live in the same towns or even the same county. Families tend to keep to themselves a lot, testing the waters outside their comfort zones is often too scary. I have pushed to connect with Teale's peers over the years, but find it is often not reciprocal, so then I give up. I'm not sure how the many families I have tried to be social with feel, but my pushing to give Teale friendships often feels like just that, I'm the one pushing. I get that it's more difficult to step outside what we are comfortable in, especially with our "kids" who are so unpredictable. I have had many times that I have failed miserably at getting Teale to do something different, socially. So in many ways, it's easier for me too, to do our usual on weekends and entertain her ourselves. I guess I have just always wanted more for Teale. I have so wanted a real friend for her, one like I had at her age is a big dream of mine. So tonight is very special to me. I can hope it's at the least a fun night of memories, but my heart dreams of a lifetime connection, that will fill both girl's with joy!

Resolution or Not to?

The New Year has me thinking about all I want, and need to improve in myself. I see 2018 as an opportunity to grow, actually every year, every day, every minute, is. We may think more about improving ourselves as the New Year approaches, but, my guess is, most of us think about this daily. Improving my health & exercising more regularly are a few things that are often on my mind, but my follow through waxes & wains. I need a plan that helps me to be better. Some may see New Years resolutions as stupid, a set up to let yourself down? I see the New Year as a fresh start to becoming the person I want to be. It is true, the several things I’m looking to embrace, are a tad overwhelming, but if I improve even slightly, I am reaching for my goals. Expectations of ourselves are necessary for growth. If we never reach for better, we will never get there. So today, on this last day of 2017, I am going to share with my spouse the goals I have. I plan on making daily goals that are realistic & achievable. Together, with the encouragement of my biggest cheerleader, I am sure we can both be better in 2018. Happy New Year friends, I sincerely hope you can embrace whatever goals you set.

Resilience

So my husband’s Uncle Steve, who is developmentally delayed, due to schizophrenia, dates a woman named Kelly. Kelly was in a car accident, as a teen & suffered a traumatic brain injury. Before the accident, she had normal development, but apparently, after the accident her development was slowed. Sadly as her fate came to light, Kelly’s Mother gave up on her. She no longer has family contact. Heartbreaking...

Well, fast forward several years. While living in an apartment complex, Uncle Steve & Kelly become special friends. They’ve known each other almost as long as Mark & I, but have only dated about 5 years. I’ve been in Kelly’s company before, but something was different last night, as I enjoyed her company. Maybe because the gathering was a bit more intimate that Kelly seemed more at ease. I couldn’t help but notice Teale’s comfort with Kelly. At one point, Teale realized her hand was out one of the slits in her sleeve, instead of through the cuff. Long story to explain a sweet moment; I was trying to help Teale understand what was going on with her sleeve and Kelly jumped in. Teale isn’t always tolerant of other people touching her but I could tell by Teale’s demeanor that she knew Kelly was “different.” Teale was more patient with Kelly, as Kelly helped her fix her sleeve. I was struck by Kelly’s warmth & sense of humor, her resilience, even though she was tossed aside by her own family. She’s invaded my thoughts & heart since last night. I wonder how much Kelly could have thrived in a loving home. The thing is, despite the lack of support from her own family, somehow she’s managed. Kelly is extremely loving & giving. She actually exudes love & is extremely affectionate. 
God’s plans may not be clear, but as I’ve thought about Kelly much today, I’ve definitely felt humbled. Humans who face adversity are resilient, but to my knowledge, I’m not sure I’ve met someone quite as brave and forgiving. I’m not sure how she’s made it through life, but the fact that she has been able to love, astounds me. May God Bless the specially abled & help us to see what they have to share with us. I just think we need to listen.  

Christmas 2017

As you can see, our picture this year stars Beau! He graduated from Saint John Fisher College in May of 2017. His degree an RN, BSN & after passing his boards, he secured a job at Strong Memorial Hospital. Beau is working at the in patient psychiatric unit. We are so happy to share, he LOVES his job! In other news, Beau still dates Hope and was even included on a family vacation out to Yosemite this past Summer. It was a very generous gift from Hope’s parents. Hope & Beau did some other traveling together before Beau started his career this Fall. He also continues to plays music & has written many songs. Beau performed with a few different bands this past year & is living home, while paying off those college loans. 

Teale just turned 19 years old! She is still at Holy Childhood and will be until her graduation in 2020. Teale is as stable as we have ever had her, both mentally & medically. We are thrilled to report her chronic kidney disease has stabilized and with that, her high blood pressure is controlled also. We became her official “guardians” in 2017 & Beau has agreed to be our back up guardian. With legal documents set, there is much relief. Teale continues to enjoy many social activities with Holy Childhood and with Hteritage Christian Services. The after school programs through Holy Childhood & Pieters Family Life Center have been life changing. It is incredibly special to see Teale with so many “like peers,” who enjoy her company! 

Gwenn is now at Pittsford Mendon High School. She has adjusted to the change well & appears much more comfortable in HS. She is not interested in pursuing music at this time & has chosen to concentrate more on art. With this, we have had her in private art classes and plan on continuing to help foster her talent & passion. Gwenn & I had the lovely opportunity to visit Florida last Winter as part of her Christmas & Birthday gift. My lifelong girlfriend & her family live in the Orlando area. Melanie was the kindest & most patient tour guide, taking us to all 4 Disney Parks! A big thank you to Mel, Hank, Taylor & Cami for their hospitality! Also to my HS friend, Brenda, who works for Disney & gave us tickets. Between Melanie & Brenda’s generosity, we did not pay any admissions fees at all! It was an exhausting but fun packed week! Gwenn, just had a trip to NYC with her Dad & cousin, Michaela. They hung with cousins, Celia, Casey & Karla for the weekend, while Mark hung out with our niece, Samantha. With 4 nieces in NYC, maybe we should visit more?

Mark is still at OCFS and playing in many bands. The third wheel in my marriage, Nadine, gets at least as much time with him, as I do! All joking aside, Mark juggles much and is a great partner!
We work hard to find special time together & recently had the opportunity to get away for a weekend. David’s Refuge provided us two nights in Aurora. It was soul renewing and the memories we made, will get me through just about anything that comes our way! Please check out this organization & recommend it to caregivers you know. The friendships we have made through David’s Refuge are priceless. 
I continue to do a variety of things; volunteering with Dream Factory & Holy Childhood, gardening for myself & others, maintaining our family in many different ways, supporting Mark’s music & blogging; which is a therapy for me. I turned 5~O on June first, but before leaving my 40’s, I had one more big surprise, emergency appendectomy & hernia surgery on May 20th. So far, my 50’s are not so bad! 

May your season be bright & joyful. May you know, though this note comes but once a year, our love is with you always! As my Great Aunt used to say, we wish you Health, Wealth & Happiness,  Ellie, Mark, Beau, Teale & Gwenn 

Reflecting

As I sit in the light of the tree, hot coffee in hand & a cozy blanket covering me, I am filled with gratitude. The world has so many issues spinning around, it can overwhelm & exhaust. Last week in church, our minister spoke about “our need for information.” How we are “spoiled” by the instant news and ability to be informed constantly. All week it’s had me thinking & trying to take a “news diet.” It is overwhelming how much information bombards us. Not staying informed is scary, like you are a bad person if you don’t know “everything going on!”
Yesterday I attended a memorial service for a woman I admired. I found out more to admire her for at the service. It also, as death does, got me thinking about my own mortality. What will others say about me, when I’m gone? So, as I sit here, I’m reflecting. How can I show gratitude more & realize the overwhelming need for information, needs to slow? Reflecting, sitting quietly in our thoughts, may be old school. Practicing meditation has been on my list for years, but somehow I never slow myself enough to “just do it!”
In this modern day of information at the tips of our fingers, maybe we should all take these quiet breaks and just listen. We might be surprised by what we hear?

Thoughts Out Loud

The most important work you and I will ever do, will be within the walls of our own homes.  ~ Harold B. Lee ~

Recently a girlfriend asked me what I am doing now that “gardening gigs” are done. 

My reply ~ “Working on staying married!” 

The truth is, I work on that daily, all year, but as my time “free’s up,” without gardening, I try hard to get us in better shape, in many ways. Some things “slip” in our life during my busy seasons. Digging us back out from under can be quite daunting!

Our girls always have a lot of medical appointments. This Fall I was hit hard with more, when Gwenn badly sprained her ankle. Physical Therapy and an orthopedist for Gwenn was not in my plan. I did plan on playing catch up with some doctors. Also, we are transitioning Teale to all adult specialists slowly. A tactic I felt was necessary, while we still have a pediatrician, who knows her medical history well. Soon our pediatrician will drop Teale, so I don’t want to be out in the cold, with all new doctors and our biggest supporter gone. Organizing Teale’s medical, financial, social & educational needs is time intensive. Gwenn’s needs are different, but many are similar. There are things I do, that I’m guessing, an average family may not deal with regularly. I’m used to juggling and staying on top of pharmacies, doctors, school nurses, etc, to be sure all orders are in place and Teale is getting the care she needs. But needs change and I learn new needs. Getting blood work regularly to make sure medicine levels are safe & not causing other medical issues is tricky. It’s a fine balance and even with our staying on top of it, we learned a hard lesson a couple years ago. Her kidneys started to fail and are permanently damaged because of medication. Chronic Kidney Disease and high blood pressure were added to her long list of medical issues.  

My gardening gigs can, mostly, be flexible. That is why it has worked for us. I work a lot of hours in good weather, to then be off during the Winter. The holidays are stressful for all families and we all try so hard to make special memories. I have both girl’s Birthday’s bookending Christmas. So I often feel that from Thanksgiving to Gwenn’s Birthday is a blur!

Mark is super busy at his job and in his many bands. I found out recently that my friends may not understand the level of commitment it takes to be a musician. Mark practices sax every weekday evening at home, after Teale is in bed. This means, at the least an hour, if he is not rehearsing or gigging out. Even on gig days, he needs “warm up time.” It had never occurred to me that those who are not musicians, (or intimately connected to one) do not know the need for working on your “craft” almost every day. Weekdays, we barely see each other, Teale gets most of his attention before he disappears to practice. By the time Mark is done, it’s bedtime. Sometimes I’m already in bed, by the time he returns. Being married to a part time musician is fun, it’s true, but we have learned balance, in our life together.

It really takes a lot of work to keep all families afloat. Mark and I have discovered scheduling  quality time together regularly. Daydates, to me, are our number one friendship saver! I believe without them, our connection may have just slipped between our fingers... and in my opinion, that can not be an option! My relationship with God & Mark are number 1 & 2, without those priorities, I find I am lost. I often will tell Mark, I need some “Markie time!” Time together renews my soul and helps me to keep doing all I need to. Thankfully, I have learned to identify this and ask for time together, Mark then makes it a priority. Honestly, I’m not sure he would ask the same, he’s kinda typical guy, work and music drive him, but I think he would agree, our friendship has been the icing on the cake of life.

I am Blessed to be married to a man who supports my ventures, working, volunteering & taking care of our family. Plus maintaining my own self, through friends and hobbies. He too, has my support, in all his endeavors and I know he knows that.

I hope to always support others journies, in my own house and outside it. Each family has it’s own unique challenges, that none of us live or really understand. And strangely, from the outside, many lives may look easier. Maybe Facebook is partially to blame? 
But personally, I love that analogy about all of us putting our problems into the middle of a circle & then being able to pick a problem from the pile, most of us would just take back our own...