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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!

Wednesday, November 22, 2017

She Chose Her Path

There's never a day that goes by that I don't have at least one fleeting thought, wondering what she would have been, without the brain damage occurring at birth. Many may think that such yearning is wrong. Many may think I should let it go. I'm open & honest about our life with Teale, so I'm sharing this very deep feeling about me. I may somewhat have let go of what Teale should have been, but I have also accepted that it doesn't make me a bad person to sometimes grieve what she should have been.
I wonder if she would have been musical, what her talent would have been? Would she have had a beautiful voice or played a mean sax? I wonder if she would have had many friends at PMHS, played sports, wanted to go to a college far away or nearby? I wonder what she would have become as an adult & if she would have been a wife or a mother?
I may never totally accept my daughters fate in this world, but that doesn't make me not accept her.

When I was pregnant with Teale we knew she'd be born with gastroschisis. A friend of ours did some healing massage & Reiki on me several times. Our friend was Native American Indian & invited me to a healing circle with other Native American Indians.
Mark & I went on a Sunday afternoon to a round house in Fishers. What happened there has never left us. There were ceremonies we watched & then I was asked if I was open to having a laying of hands. With the exception of the one friend, I had several "strangers" lay their hands on my pregnant belly. Some touching, some just hovering. After several minutes people shared what they felt the spirit of our baby was telling them.
Many moving thoughts about our baby were shared; She had a strong, incredible spirit & much energy. She chose Mark & I as her parents. She chose her path. Her gastric issues would be a low priority of the many other issues that would surface.

Teale is the heart of our family. She both bonds us & divides us. She centers us & helps us to believe in our abilities to help her. She teaches us the most & tests our patience & our tenacity.
Remembering ~ "Teale chose her path" brings me the most peace. So even though I often wonder "the what if's." I also know we are living a life with a spirit who wanted to teach us & hopefully we are learning the lessons well.

Wednesday, October 25, 2017

Me...

At times I have felt lost in this life, I am a wife, a mother, a friend, a sister, an Aunt, but who am I? If I try to define myself I get lost in what I do, not who I am. Do we lose ourselves when we connect with another person to share their life? Do we stop being who we were when we have children and their lives become ours? I’m suddenly realizing I have evolved a thousand times in my lifetime, but what have I become? Is this midlife crisis talking? Am I reaching for my youth, when all things seemed possible and my world was all I wanted it to become? Or have I actually already arrived at where I was meant to be, with who I was meant to be with? I am me, but I am also all I have known and lived, wrapped up into one. May I continue to see the joy in the mundane and the love in the everyday. May I realize I am me and I like me. 

Friday, October 6, 2017

Heartbreak

Yesterday the father of a special needs adult took her life & his own. For me, this sadly hit home. You can judge & point fingers, but I will not, both Mark & I admitted to each other, with much heartbreak, we got it. We’ve been almost that desperate. Sleep deprivation, constant abuse from someone you love & care for, no breaks from the stress & sadness to recover, we’ve experienced the worst. Let’s talk about the real issues around this tragedy. There is not enough help, the pay to be a caregiver is so low, it is difficult to find good people. Friends & family are scared of your situation & may want to help, but don’t know how to. There are few relief programs that give families a break. There are no crisis places to take a person with special needs, so you can just take a day or two to recover. We sadly understood the desperation of this father. We are Blessed to have each other to help balance the stress & be honest about how WE are doing. Not every couple makes it through raising a special needs child, as well as we have, it can be quite divisive. It is way more stressful than words can say, yet, in our case, Teale is our greatest accomplishment. Teale has come through to the other side & we are basking in her stability, but don’t get me wrong, I understand that desperation & I will not judge.

Yesterday I wrote this on Facebook. It happened in a town very near my hometown. Actually, where Mark & I owned our first home. Today I learned the father may have been involved in child pornography & was being investigated by the FBI.
Does this change my feelings toward the situation? Yes, drastically.

What it doesn't change, is the sad reality of what families like mine live. In comments on my post, I shared how I seriously thought about murder, suicide of Teale & I, in extreme crisis times. I fantised about driving into the way of a Mack truck with her in the car. I can remember being so sleep deprived that it actually "made sense & seemed like a reasonable solution." There are two specific times I can remember telling my husband how close to the edge I was. The other time, I said "I know I won't do it, but I'm as close to suicide as I possibly could be." That day we had Teale committed to the in patient children's psychiatric unit at the hospital. We had been sleep deprived over a month, as Teale was in a severe manic state. Luckily, at that time there was room for her in the unit, but other times since, we've been turned away. I can't and won't speak for Mark, but I will share, I remember times he & I couldn't see the light. There was no hope left in us and only fear that this was Teale & our life. There were times that Teale was so abusive, I was being asked by doctors if Mark was hurting me. I was constantly bruised & in fear of the next rage. PTSD is thrown around a bit too quickly these days, but I will share, Teale's psychiatrist diagnosed us all with PTSD when Gwenn, our youngest,  was only 3 years old. There was no relief, we were alone in the Hell of trying to survive Teale's mental health illness. Some understood how bad it was, but very few really knew our pain. There is not enough help for the mentally ill, there is not enough help for a family like mine when in a crisis. There's no relief agencies that can give a family a few days off to regain strength and courage to continue care.
Teale is very stable these days, but I remember those wretched days well, the days that death seemed like a viable option. God Bless the caregivers. 

Saturday, September 30, 2017

Love Hard

Life is precarious, every day we try to remember this. We try to live life fully. We try to treat our loved ones with care & respect. We try to remember that at any moment, life could change.... but, we get caught up in the everyday issues. We get caught up in our own pain & difficulties. We forget to love completely, to forgive easily & to just be kind. Yesterday I had a jarring moment of reality. As I jumped out of the shower to answer my phone, I knew it was odd it was ringing at that time. I answered because I felt a push that I needed to & I was not wrong. It was the teary voice of my son's girlfriend. She had just been involved in in accident & needed me to pick her up. As I quickly got dressed & rushed to get her, thoughts were swirling in my head. I remembered when I totaled my Mom's car as a brand new driver. I remembered how scared I was. I remembered how tough it was to drive again after that accident. I not only felt like others didn't trust me, but I didn't trust me.
Yesterday, as I turned the corner toward the accident I realized there were several cars involved. There was a fire truck, an ambulance, police cars, my heart sank. The fear of it all, the realization that she could have been killed, rocked me. Life would have, could have been horrifically changed. She is ok, shook & shocked, but alive and well. All the drivers are fine, but it could have gone differently.
So, treat others with respect, be kind & love hard. Life is precious & we just never know when it will end.

Sunday, May 28, 2017

Memorial Day Poppies

In 1992 when my Dad died, he was living alone in his house near Cobbs Hill Park. At one time his wife & he had beautiful gardens. His wife developed brain cancer at a very young age & when the cancer came back a second time, it left her in a coma. She moved into a facility where she died a few years after my Dad. Cleaning out his home was a challenge as his mental state had deteriorated badly & he had stopped caring for the house & the gardens. He & I had been estranged for years before his death because of his mental illness. I had not invited him to my wedding & he never met my Mark. One of the few things I wanted from his home was plants. The poppies in my garden were my Dad's. Every year they remind me of him & the happier days before his mental illness took him from me. Often I have wondered if his serving in Korea played a part in his decline. This is my Memorial Day story...May the poppies bloom.

Saturday, April 15, 2017

The Power of the Mind

I wrote this a few years ago on Facebook  & thought I'd share it here in my blog.

The other night I had a lot of trouble falling asleep. Visions of Teale's first Grand Mal seizure suddenly flooded my thoughts. I had this overwhelming sickening realization that if I had not gone into her room that night, the next morning she would have been gone. That first Grand Mal was over an hour & a half long with ambulance transfer to Strong & a critical care team jumped onto the ambulance with us mid route. Our minister met us at the hospital, just in case Teale didn't pull through.
I'm not sure why I had such a horrid vision the other night, but I woke wondering if the Anniversary of that first seizure was upon me. Ironically our next door neighbors had moved in the day of Teale's first seizure, so yesterday I texted them asking out of curiosity what day they had moved in, the response;  April 15th, 2003. The power of the subconscious mind is astounding. Even though I had chosen to not remember the date, my subconscious mind knew it was upon me. We could have lost Teale that night, she had aspirated vomit, was grey & foaming at the mouth when I found her. If I had rolled over with baby Gwenn curled up to me & fallen fast asleep, what would I have found come morning? Luckily I listened to the nudges from God & got up to check on Teale. A forever reminder to me that if I listen, I can hear God.

PS 4/15/06 was the date of my Mother's stroke that she passed from a week later. Strange today's date is filled with so much heartache. A connection I had never made until this year.

Friday, March 24, 2017

Always a Musician

When we married, we had no idea how many twists and turns our life would take. Every marriage starts out with hope and promise. I'm sure I didn't know how complicated combining our separate lives into one would be. I was filled with the euphoria of a new love. Mark, a kind, gentle man, seemed to fit my life well. He was still attending a community college in our area plus, filling his time, in a band. Although I knew this was important to him, I don't think I knew how much Mark's music would be a part of our journey together. What I've learned, a musician, is always a musician. When Mark has taken breaks from that life, I don't know, if during those times, I appreciated what a huge sacrifice it was for him? As I age, I understand better how much his soul needs music, to not only enjoy life, but mostly, to truly thrive! I believe his busiest times, playing many gigs, with a variety of musicians, are his most joyful. In the beginning I may not have truly understood, but as we age, I realize, Mark's involvement in bands doesn't take from me, it enhances our life together. In my acceptance & understanding of this, we have bonded & our marriage has strengthened.
This Sunday, 28 years ago, we told our families and our friends that we planned to marry. We had, in our eyes, been engaged since February 14th, but had chosen to keep that to ourselves. So on Easter Sunday, 1989, we announced our engagement and our Wedding date. It's hard to believe it's been 28 years, and then again, it feels like forever. The lessons learned in my marriage have been many. I'm always working to be a better spouse and partner. Recently, someone pointed out to me that Mark and I are good at not making a big deal, out of every little thing. I know Mark is quick to forgive, I'm still working on that. We have grown in many ways, picking up each other's, hopefully, better qualities. There were times I just didn't understand Mark's need for practicing, every single day! I even felt slighted by it, like he chose his music over me. Now, it's just part of our daily life.
I'm proud of how far I have come in understanding Mark, as a person and a musician. There were and will be, times of not understanding, but as we've grown, those happen less and less. He's a musician, possibly, before anything else, sharing his gift and showing love in his own special way. 

Saturday, March 4, 2017

Proactive Overthinker

Tough conversation;  Would you sterilize your daughter if her getting pregnant would jeprodize her life?
These are things I overthink.
I know I would have to make a choice to abort, if God forbid, Teale were to become pregnant.
Mark and I have debated this much, but today I asked the question at my support group. I often attend a group on Saturday mornings, all the adults are caregivers of someone with special needs. These peeps normalize my life, they "get it." They have lived through or thought much about the strange things we, as caregivers, have experienced.
They don't run or judge, when someone asks a very difficult question, they sit back, breathe and talk it out.
Today, we talked it out. We talked about my daughter, we talked about their sons. We expressed the fear of our children bringing another child into the world. We also talked about how, in my situation, Teale could die from a pregnancy or the baby could be born with multiple disabilities because of the many medications Teale is on.

In many ways, being proactive is the right choice. Why put any of us through a painful choice like abortion. But, then there are the great strides being made medically, every day. What if Teale could be "fixed" someday? What if her brain damage could be reversed and she then couldn't have children because I had made a decision to sterilize her?

It's heartbreaking but a real reality that Teale could, at some point, be sexually active. My gut says she won't choose to be, after all, she is barely receptive of physical contact. I'm not a bury my head in the sand type of person though, so I accept things change. The other sad reality is that she is vulnerable and she could be violated. With my being a proactive person, I'd rather deal with this now, before any tougher decision must be made. I am a pro choice person, who personally would not have an abortion.

When I had this conversation with Teale's previous OBGYN, it seemed like it was a possible and probable choice to sterilize Teale, but then she retired suddenly.

Now I will have to find a new doctor, who understands my heart. A doctor that doesn't see me as a monster, but as a Mom, trying to do the best she can for her daughter. I deeply love Teale, her mental and physical wellbeing are my only concerns.

So, I ask, would you sterilize your child? Would you judge me for wanting to? 

Friday, February 24, 2017

Learning to Let Go

We are slowly working on transitions for Teale to be in the care of Beau, eventually. The process & thoughts that flood my mind are so overwhelming. I am realizing all the things I automatically know & do for Teale's care that I never voice, even to Mark. We are a good team & support our family in certain roles/duties that the other may never do or even know about. It has worked well in our life, but the thought of handing over the reigns to anyone, is a struggle.
I know I'm a bit of a control freak. I need/want Teale cared for to my standards. Starting a notebook of every detail of care may help me to let go, as I work through this process, but will I ever be at peace with "the letting go?" There are many before me, who have had to give up care of their special needs children. I try to learn from their experiences. I try to be realistic, Teale could easily outlive me by thirty years. Someday, I will be too old or gone & that day is slowly creeping up on us. So before it is too late & I need the transition immediately, I will prepare as best I can. Loving a child with many needs teaches us much, but letting go probably comes the hardest. 

Saturday, February 4, 2017

Gwenn's Birth Day

I forgot to publish this on the day, but want to save this memory.

Fourteen years ago on 1/13/03; Beau was 7 years old & in the 3rd grade. He was very excited about being a big brother again & hoped for a boy! Teale had just turned 4 years old, her behaviors were getting more intense & more difficult to control. Sadly, we had just switched her from her very sweet classroom at Augustine Children's Center, to Mary Cariola Children's Center. The all day program at MCCC was recommended to help us & Teale, as our discovery of her mental illnesses was starting to unfold. It had been a difficult switch, because she had been at Augustine 2 years & we were very comfortable there, but the drs and the staff at both schools assured us, this was for the best.
Our new baby was to be born on a Monday morning, by planned cesarian section, since our first 2 births had been quite traumatic, my dr thought this was for the best. We had chosen, once again, to not find out the sex of our baby. For me, it gave me something to look forward to, God's surprise. I had no real opinion on what I wanted, a boy for Beau seemed nice, but a sister for Teale and a typical daughter for me, seemed sweet too. As cliche as it sounds, Mark & I were just hoping for a healthy & uneventful birth, still we had the trauma team scheduled to be in the delivery room, just in case.
I desperately wanted to be handed my baby immediately, as this was my last chance at experiencing the birth of my own child & both of our other two had been rushed off to the NICU.
The day before, a Sunday, had been filled with much anxiety & overwhelming fear. I recall being teary & trying to hold in all the emotions I felt. I was so scared of delivering a baby not breathing, for the 3rd time.
I wish I could have known it would all be ok & enjoyed my final pregnancy & birth more.
Gwenn Gabriela came into the world silently, but breathing on her own. To this day, her silence @ birth, is indicative of the person she is. Gwenn is Gwenn & always has had a very "quiet & chill personality." Her excitement over anything is practically nonexistent, so her birth makes much sense. But, as I waited for her screams in the delivery room, I remember being terrified "I had done it again."
Mark videotaped much of the moments immediately following Gwenn's birth. Her incredible patience as the nurses poked & prodded her, is actually very funny. Beau was probably a little disappointed he didn't get his brother, but he never let on & was very sweet with her. Teale told every person she saw ~ "The good, good baby came out!" And we would have to explain...
Those were sweet times with my young family.
And even in the toughest times of their young childhood, I have loved being a wife and a Mother.
Happy Birthday to my youngest, Gwenn Gabriela! I 💗 you!

Thursday, January 26, 2017

Abortion is...

As I drove past the Mother Teresa billboard on 390 East this morning, so much went through my head.
"Abortion is the greatest destroyer of peace."
As I passed the sign, with my 18 year old daughter, who I had just been granted guardianship of, I thought of her journey. I thought of the moment I was told she had gastroschisis. I thought of the offer, actually, the push, in that consult room, for us to have a late term abortion.
My head has been spinning in so many different directions after reading that quote. Mother Teresa is a woman I admire, a woman I think of, as an angel on earth. She helped so many with her kind acts and with her deep, spiritual thought.
But that quote seems destructive, divisive and even cruel. I personally struggle with abortion. I do believe a soul is made at conception. I believe in a God and in his will of a child to come to us.
There is something in her quote that speaks to me though, after all, if Teale had never been born, I may have never known peace. Her life has much meaning, it has changed hearts and expanded mine. Mark, just the other day, bragged to our court appointed lawyer for Teale's guardianship ~ "Teale's life has made us closer as a family and strengthened our love."
 Life without Teale is unfathomable, my purpose here on Earth was changed the moment she came into my heart. So in some ways the quote speaks to me, peace surely would have been destroyed, had I aborted Teale. My own soul may have forever struggled?
But then there's the other side, the unthinkable "what if." What if Teale were ever violated or were to become pregnant? She could not safely grow a child in her body. The medications Teale needs to stay mentally and physically well, would surely harm an unborn child. To take Teale off those same medications for the health of a baby, could easily kill Teale. She has severe mood disregulation, bi polar disease and Epilepsy that are all well controlled on medications. Taking away any of her needed medications could spiral her issues and be quite disastrous.
So in this case, I see the need for a choice, I see that even though we take precautions to protect Teale, a pregnancy could occur and I would need to chose her life over an unborn baby...
Mother Teresa has been quoted many times, her deep spirit is an inspiration to many, but this quote troubles me.
It is an age old argument whether abortion should be legal or not. The reasons on both sides are great, but in the end, it is a personal choice.
For me, I continue to remain conflicted. If I had been easily swayed in that room 18 and a half years ago, where would I be today? Surely I would not be as loved or know love as deeply...