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Sunday, December 31, 2017

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.

Saturday, December 30, 2017

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.  

Sunday, December 24, 2017

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 




Sunday, December 17, 2017

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?

Tuesday, December 12, 2017

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... 

Wednesday, November 29, 2017

Thanksgiving 2014

On Thursday there was not a laugh or even a slight smile from her all day. Teale literally just growled, yelled & was horribly mean to us the entire day. Her soul seemed completely unsettled and very angry. Yesterday was still quite unpredictable & unsettled  at times, but she smiled & laughed some, which made the day 100% better. I truly needed to see that joy, even just a little, to renew my faith. Cycles are common with Teale. She goes through weeks of tough, hopefully followed by weeks of happy & calm. The last few weeks have been unpredictable, rages have been more often again, intensity of moods has been high, but Thursday was by far the worst day in a very long time. It broke both Mark & my heart, not for ourselves but for Beau & Gwenn, who will forever remember Thanksgiving 2014 as a very sad day. Our family has no choice but to plug through those days when Teale's moods control us all. Having those days happen on holidays is more common than not. I have often wished for crisis help on days her mental illness is uncontrollable. A place she could go, so we could take a break & renew our souls to continue caring for her. I have wished for magic pills & therapy that cures. On Thursday I wondered much about  medical marijuana & if it would have helped Teale to feel more at ease in her very obviously tortured self. I'm often frustrated by not being able to help my daughter enough. There is no greater pain for a parent than to watch your child suffer & to have no ability to help them. How I hope that someday mental illness is not treated as a "closet problem." I pray those who suffer like my Teale someday have the same support and love that a person with another disease gets. The shame associated with mental illness is unproductive & useless to the many people who suffer in silence. It is not Teale's fault she has this challenge. I am not ashamed to discuss it openly b/c I am proud of how much she has taught & improved over the years. Our experience has been able to help countless others who reach out to us for support & advice. Sharing the journey encourages others to seek help, knowing not everyday has to be like "Thanksgiving." There is joy, but some days it is just buried very deep... Keep the faith & support the mentally ill. Their pain is not "just in their heads."

Advent in 2015

This is a Facebook memory I have decided to save and share here.


Mark & I "high fived" at the end of the church service, not because it was perfect, but because we had survived.
All five of us were in church to light the first candle of advent ( the candle of Hope, loving the irony yet?) & seconds before we were to go up as a family, Teale started melting down. Mark stayed with her at our seats while Beau, Gwenn & I went to the alter. Teale continued to be angry, but everyone just continued. With the singing of the anthem, she seemed to start to be more at peace. Music is healing & we were again reminded as a family that we are welcome, in good & in bad. So maybe it going perfectly would have been nice, but would the lesson had been the same? The following statement we read shortly after her outburst, puts much in perspective.

"Living each moment with gratitude and receiving each person as a precious gift, may we walk in the way of Christ. Amen."  

My husband’s perspective;

I love how unwittingly Teale has been so powerful in delivering Christ's message of acceptance and love over the years. Especially at Mt. Mountain Rise United Church of Christ. We have had a couple of "mottos" in our church over the years; "God is still speaking" and "Wherever you are on life's journey, you are welcome here." A hundred thoughts have gone through my head since this morning's service. I'm so glad that God works through her, but must admit that sometimes it takes me off guard and wears on me. And I wonder how Beau and Gwennie deal with it. I mean Teale was screaming in the sanctuary, but I couldn't get her out of there. I thought  at the end of the service I was going to have to help Beau get up out of his chair. But, in the end, we all left smiling!