Caregiver

Apparently November is National Caregivers Month. I was trying to figure out what this is to me. I decided that in order to do that, I needed to write. 

Caregiving is everyday. It’s not a job, Mark or I walk away from at the end of our shift. “Caregiving” sounds wrong somehow. I’m struggling to understand and put into words why I feel this though.

Since COVID, when people ask me what I do, I often say “I lost my job in COVID.” The truth is, my job got more challenging in COVID. I was home 24/7 with very little outside support. Teale and I barely left the safety of our own home. I had to fill her long days with activities and purpose. 

Parenting changes as Teale grows. We work and hope for more independence, all the while, knowing independence is really just a dream. The grief, I’ve often talked about experiencing, is never ending. Maybe the real reason is because the end of caregiving will only come in death. That realization probably shocks others, but, saying it out loud is liberating. It is something that Mark and I keep deep inside, because admitting it hurts too much. Death is something we fear when it comes to our unique families. There is the fear of our spouse dying and being alone in “this.” There is the fear of our child dying and our never recovering. 

Death will be the only way we will “retire” from our job. Whether it is our own death or the early death of Teale, death is the only way we will stop caregiving. So, is caregiving the right word to describe what Mark and I do? 

For us, it’s truly our life. It permeates every conversation, every moment. To be my friend, you must understand this and be tolerant of my mind constantly circling back to Teale. Teale’s care is ingrained in both our souls. Teale, we never get a complete break from, because even in breaks, our hearts are with her and our minds worry. 

So, somehow calling us caregivers feels demeaning to both us and to Teale. She’s not in my care. She is a complete person, our daughter, who we love and who we are always there for. I think that is what most call parenthood? 

It’s the History We Share

 Sometimes I wonder how I got so lucky. 🍀 But our love isn’t just luck, we both work hard at “us.” ❤️ We both respect and care for each other. If either of us was passionate about anything, we would move mountains for it to happen for the other. 

After a beautiful Wedding weekend for my niece, I find myself reflecting on Mark & I, our own beginnings, and the fresh, fun of new love. What a special time in any relationship that is, when you are out to conquer the world together. But now is what I truly love, the deep history and profound love that has grown between us. 

I do not believe marriage can be left to chance. 

One of my most favorite compliments about my marriage, was said by Emily, the bride. 

She once told me, “You guys are great together, but I feel like you are both ok & would be ok without each other too. You both have people and hobbies outside each other.” 

I have reflected on this much. She’s not wrong, we obviously love each other and enjoy each other’s company, but we both have lives outside each other also. 

Another compliment I reflect on much was said by a close friend, “You don’t sweat the small stuff, and pick on each other for every little thing.” That is true. At some point we both found respect for each other was far more important than anything else. 

I don’t believe Marriage has one or two  secret ingredients. I do believe you BOTH have to want it, for it to work. I believe we have worked to keep our friendship and to grow it together. I know we have worked to stay in love. And maybe most importantly, we have respect & trust for each other. 

I believe marriage is work, I believe it has blah times and elated times. I realize even when I think someone’s marriage looks easy from the outside, I don’t know the whole story. 

I know I appreciate Mark and anything we’ve been through to get here, has been worth it. We’ve shared a lot of ups and downs together & often I joke, no one else would want us. Our life isn’t easy. But really, it is the history, we have, that I know can’t be shared, by anyone else, and that has built “us,” mistakes and all.

Dr Dave

 I haven’t completely processed this, but we are officially done at Pittsford Pediatrics. To say we were well cared for there, would be a gross understatement.

We started with Dr Matteo Lopreiato in 1995, when I was pregnant with Beau. He soon would be referred to as Dr Matt. His demeanor was exactly what I liked, straightforward and honest. Beau’s birth would be difficult, Dr Matt would hold my hand through the worry of him being born blue and in the NICU for a week. Our first few years with Beau were riddled with worry, ear infections and strep throat seemed to be way too often. A constant ball of energy, Beau would keep us on our toes. Dr Matt was sometimes brutally honest. He would tell us things we probably didn’t want to hear about our parenting style. Not so gently correcting us. 

Soon Teale was on her way, the worry during her pregnancy was often too much for me. Dr Matt could talk me down, in a different way from Mark. The birth more complicated than anyone expected. Dr Matt sat in my hospital room and gave us the facts. I, apparently not ready for all the information he was throwing at me, fell asleep. Mark and I still talk about how I fell asleep while Dr Matt talked. After Teale’s two months in the NICU, the next few years with him would be constant. Teale would be seen by several specialists and Dr Matt very often. He would help keep things “real.” Interpreting what they all said and managing her care. 

I would soon be pregnant with Gwenn. Dr Matt would call me before announcing his leaving the Rochester area to move back home (CT) with his family. I was heartbroken, how would I ever find another Dr Matt? He encouraged me to stay with the young doctor he had hand selected to take over for him. 

When I met this doctor, I remember thinking he was as young as Doogie Howser. Younger than Mark and I, there was no way he’d understand all we’ve been through with Dr Matt. Starting over was painful. I had to explain much of our children’s history, but, I could tell this doctor was genuine. He was invested in giving us the best care. He did something I had found many doctors had not, he actually read Teale’s back history charts. Educating himself on her, so I didn’t have to relive every painful moment, while repeating her history. Dr Dave Topa would be an excellent replacement, his new eyes and a new demeanor, I would grow to fully trust and count on. I remember one time, in one of our many times of crisis, I told him, he was our number one. He was the first person after Mark and I, who truly got us and what we have lived through. He understood and cared about our children, but our relationship went far deeper than that. He truly cared about Mark and I. Our well being was taken into account too. Dr Dave would listen to our fears, our pain, our worries. He would manage care between several doctors, he would advocate on Teale’s behalf and he would interpret when needed. Teale would monopolize our relationship with Dr Dave, but he was good at making us focus on each of our children individually. Our relationship hit a higher level the year Teale stopped regulating body temperature. Her temperature running at approximately 99.7-101.7 for months. We would run all sorts of tests, see specialist, the infectious disease team would see her, nothing would be found. Dr Dave would go to bat for us with the school district that she could be at school. Our having her home for an extended time, would have mentally fried us. He was sure whatever it was, it wasn’t contagious. We would learn individuals with brain injury could stop regulating body temperature. He didn’t take this change lightly though, we were to report her temperature 3X a day. To do this more efficiently, I texted him the information to his personal cell. He had given me his number years before and I had been careful not to abuse this. Back then unlimited texting was not a normal part of cell plans. When he told me he changed his cell plan to accommodate us, well, I was impressed. Teale’s temperature regulating would eventually return to normal, but educational advocacy would continue. Dr Dave would sit in on many school district meetings with us. He would help us fight for Holy Childhood and for Teale to get all she needed and deserved in life. Dr Dave would be harsh, when he felt he needed. In one instance, he would insist we hospitalize Teale in the inpatient psychiatric unit because Teale had stopped sleeping and Mark and I were completely depleted. Dr Dave saw us through the worst times of our lives. He saw us cry, too many times to count. He helped figure out the cocktail of medications to cure seizures, to regulate moods, to stop the decline of CKD, to regulate her thyroid as it was being attacked by her body and more. Dr Dave was there when Teale collapsed in his office, her heartbeat plummeted and she was grey. Dave stayed calm, while I cried and my favorite nurse comforted me. That nurse passed away suddenly years later. I attended her funeral, feeling a deep loss for a woman who showed us much compassion and love. Also, I can not fail to mention Dr Dave’s wife. She was never far from my thoughts when Dave called or texted or met me at the office on “off hours.” I would often tell him to apologize to her for me. 

Walking away last week, after handling in my release for Gwenn to see an adult doctor, was surreal. 1995-2021 we got to know the staff and they knew us. I could call and most knew my voice. Most knew if I was calling I needed to be heard. 

Gwenn was ready for a female adult doctor, I’m just not sure I was ready to say goodbye to Pittsford Pediatrics. Thank you to everyone there. May you know how very much we counted on you, and Dr Dave, to get us through some of the toughest times of our life. I can not imagine our lives with out your care. May God Bless you, Dr Dave, and may you continue to be there as a friend, to our family. 

P.S. the reason we chose Pittsford Pediatrics was because Mark had also gone there as a child

32

 8/12/89-8/12/21

32 years of marriage…

Thirty two things I like about you & us;

1) your ability to take a bad situation and make the most of it

2) you’re cute/handsome 

3) you’re musical abilities 

4) how I can always ask you how to spell just about anything 

5) how humble you are

6) how incredibly patient you are, especially with me

7) the fact that you make my coffee every night before you go to bed, even though you don’t drink it

8) how you still open car doors for me

9) the love you show to to our cats

10) the way you pretend to be interested in my flower gardens and plants, when I’m pretty sure I’m boring you

11) how you still call me stunning and the most beautiful woman in the room, all the time

12) TGWTB

13) that you are level headed and without drama

14) how much you gush when talking about our “kids”

15) the many nicknames you have created for those you love

16) your commitment to practicing sax

17) our twisted humor in tough times 

18) how I know you are loyal, sincere and honest, without question ~ always

19) how much you care about others

20) how kind you are to me and all people 

21) how much fun we have together 

22) how you won’t walk ahead of me and always open doors for me

23) that you barely ever swear

24) that you appreciate my supporting/coming to your gigs and tell me so, often

26) your crooked smile

27) that you appreciate my ability to fix things 

28) that we have a strong partnership and share life’s challenges and the many chores 

29) how you compliment my cooking all the time

30) that you will always make sacrifices for the kids and myself 

31) how you take care of the grocery shopping, knowing I hate it

32) that we are here, at thirty two years of marriage, together & still liking each other  

I love you Big Red ~ Happy Anniversary! 

It’s Time…

 I woke knowing it was time. I’ve talked about it for years but life happens and I never get around to it. I woke from a restless night, dreams in between the awake times, something nudging me. I need to figure this out. I suddenly realize there is a higher purpose to sharing our story. 

Mark’s 56th Birthday was yesterday. Heading towards 60 suddenly seems real. Time seems to be slowly telling me, your time is ending. I’m not saying I’m sick or I’m leaving soon, I’m just saying I’m in my last 1/3 of life and it’s now or never. 

I need to write that book, I need to share our journey together. 

Maybe the higher purpose, is what it has always been. Writing helps me to release. Writing helps me process all I’m living, and gives me perspective. The written word is permanent. You can hold it, it can be reread and it is tangible. I have always found it interesting how if I write something down, there is a certain closure. Closure may be what I’m looking for. 

Potato Salad

 Sometimes, out of the blue, I especially miss my Mom. So I make her potato salad, with lots of dill and red onion. Two of her favorite flavors, in one dish. 

My memories are clouded, some good and some not. She was flawed, but we all are, and her flaws built much of my strength. So instead of holding onto what I didn’t like, I try to remember the good. 

The way she believed in girls and women is probably the biggest lesson I learned. My Mom never thought a man had to save you, but a good one, could enhance your life. She was proud of the partnership I had. Sadly, she died, before she could see how truly exceptional, he became as a father and a husband. 

She believed in the Girl Scouts, the mission and it’s lessons. She believed in the earth and that gardens of beauty were worthwhile. She loved babies and the promise they provided. She taught us to see people and care for all. The urban programs she started were to bring better unity of races and cultural divides. She believed someday the divisions of races would fade. 

Campfires remind me of her. The smell in my hair after being near one can transport me to childhood. Beechwood was one of my most favorite places to go. It was a Girl Scout Camp in Sodus, NY. The rangers name comes to me, out of the dark recesses of my memories. Skippy, but I can’t be sure I am actually correct? I hate not having her to call and ask...  My Mom’s GS camp nickname was Rusty. She got it because her hair was the color of rust. 

My Birthday coming, or the death of yet another friend’s parent. My Mom has lingered in my mind much, over the last few days. 

The story I was told, was that I was almost born, on a camping trip. Even though she was due soon and I was the last of five, she still went Memorial Day weekend camping. Her Girl Scout troop was counting on her or maybe she just wanted to enjoy a weekend in the woods? Either way, she was correct, it was fine and I wouldn’t come until Thursday, June 1. Maybe that’s why I love a good campfire and the smell of it lingering in my hair this morning. Miss you Mom... 

Congratulations My Friends

I find the grief still comes, at unsuspecting times, for reasons I wish I could ignore. 

Four years ago this June, Teale should have graduated her typical high school. I knew that time would be tough for me. I knew I would need to process my pain, to let it go. 

This year, those same kids that Teale knew, when in an inclusion setting, graduate again. The pain is different this time around. Maybe I understand and become more used to the losses?  

College graduations into adulthood, careers, relationships, Weddings, babies, it’s all bound to make me pause. I am bound to wonder and grieve the “what if’s,” but I also celebrate the relationships we are lucky to have.  

The life Teale lives, although not typical, is hers. She doesn’t really know it any differently. Mark and I do, we are the ones who pine for “normal.” We are the ones who feel the sting, as we watch the “kids,” who are her age, growing in every way. 

Stopping to feel this pain, to share my feelings and acknowledge it, helps me to move past it. I know I can’t push it down and expect it to all to disappear. 

I’ve learned much from Teale. I’ve learned much because of Teale. I’ve learned much in spite of Teale. 

It’s different, when you experience an emotion, that no matter how hard you try, you can not rationalize or push away. I have found if I verbalize my pain to Mark, it’s easier to release it. Mark understands, we share many of the same pains and joys, how bittersweet that is. 

On Facebook, I am friends with many of the typical family’s from Teale’s inclusion days. Please, don’t get this wrong, I am happy for those peers. I am thrilled for  those who are graduating college. I appreciate seeing all their achievements. 

The separation between my being happy and my pain, are difficult to put into words. I enjoy seeing the joy and celebration of the families. I love seeing these “kids,” who obviously meant something to my daughter and to my family, succeeding. So, please don’t cut me out of sharing those milestones. That would hurt far more. I don’t want my friends to walk on eggshells, scared, somehow they will cause me pain. 

Life is a series of events. Memories are built and love is shared between people. Grief creeps into these special times and then it fades. It fades because my love for all of you is stronger than my feelings of loss. 

Time doesn’t heal all things, but it has helped me with acceptance. Time has helped me to know, I’m allowed to feel, whatever it is, I feel. 

So as May continues, and college graduations are photographed and shared. Please remember, I applaud all you have sacrificed and all your loved ones have achieved. 

My losses will never diminish your achievements. I may need time to process how I feel in certain situations. I may need to talk out my pain, so I can fully appreciate the joys. I will always get there though, because achievements look different for everyone. Teale’s life has touched and taught many, maybe that is her equivalence of a college degree.