Dear Mark

It occurred to me after Mark's Mom died, that there are too many times in our life that we regret not telling someone we love, just how much we love them. Mark is my everything. I know as strong women we are taught not to rely on a man for our wellbeing. I was raised that way for sure. My Mom & Dad divorced when I was young. The years with just my Mom were challenging in a society just starting to accept that divorce happens. I often felt different, but in my home I was taught a girl did not need a man to lean on. Truth is, I'm still a "tough woman" who doesn't need Mark to get through life. I know if God forbid something happened to him or to us, I'd be ok, but his partnership means the world to me. He is my best friend, the one person I trust completely and respect wholly. Life would go on if I lost Mark, but it would never be as sweet...Too often it is after the person passes that you think about all they meant to you. Today I want to tell my husband some of the reasons I love him....

Dear Mark,
From the moment I met you, I knew you were someone I wanted to know better. Sure, it was your looks that sucked me in, but it was your personality that kept me. I watched you and saw much kindness. Our chats were easy and I felt comfortable with you. There were opportunities in those months when we first met, to the day I finally asked YOU on a double date, that I got to observe you as a person. What I saw was a very decent man. I was intrigued by your relationships with your family, especially the friendship I saw with your Uncle Steve. I loved how you treated him, like a friend, like an equal, like a person who deserved respect. Uncle Steve was obviously developmentally delayed, but you never "explained him." THAT I LOVED! I loved how you didn't act like you had to make excuses for him being with you at every softball game and at all those times we went out with the team, Uncle Steve tagged along. That part of your personality, that kindness and goodness could not be taught, it was ingrained and that is what truly sucked me in!
Our relationship didn't start until well after our softball team had finished the season. I already had about six months of a "friendship" with you when I realized we both seemed attracted to each other. The problems were many though. You were in a longterm relationship with a girl who attended Syracuse University. I respected this and stayed away, until the night you "cried on my shoulder" that you and she had broken up. I often wonder if I smirked as you told me? I bet my joy was tough to contain. After all, I know your telling me had some meaning too. That relationship was indeed rocky in those days. You had some on again, off again times. I wasn't sure I should put myself into that "rebound girlfriend" role, but I did. Long story short, we just celebrated 25 years since our first date.
What I've learned in the 25 years with you has hardly changed from my first impressions. You are one of the kindest people I have ever known. Your intentions are always good and well meaning. I know I could not come up with a time you were quick to judge or dislike anyone. Your thoughtfulness has taught me much. I've mellowed with being your wife. I go to you for "talking off the fence" because I know you will give me a perspective I had not seen. Sometimes your Devils advocate attitude can be annoying when you act like you don't see my side of a situation, but it is something I've come to expect from you. As I'm sure there is much you have come to expect from me. I am the driving force of our relationship, the person who pushes you and us to move forward and take chances in life. I force you out of your comfort zone with spontaneity and fun. I am the date planer, the social calendar for the whole family and the organizer of our crazy life. I get you to take days off and spend time with people you love, namely me, but others too. I sing "The Cats in the Cradle" song to you when I think you need to look more closely at who or what is really important in life. God matched us well.
I love so much about you. Remember that time I dropped our air conditioner out our bedroom window by mistake and it was unfixable? You were so kind about it, it was like that quote by Maya Angelou~ “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”  I don't really remember what you said, but I know how I felt. I felt safe and loved and that it was ok to make a mistake and I could trust you to care about me more than  you care about stuff. You have done this consistently in our relationship. You have made me feel cared for and loved in small ways and in big ways too. I love how you often make my coffee, even though you "hate the stuff." I love how you think to stock up on things I need when you shop, like saline for my contacts, even though your eyesight is perfect without corrective lenses. That you do 80% of our grocery shopping, because I hate grocery shopping, I find incredibly sweet. I love how no matter what size I've been in our 25 years together, from healthy & fit to pregnant or overweight, you always tell me how much you love my body. Some of my favorite compliments are stunning or when you say "you are not worthy." That one cracks me up. I have often felt like the luckiest girl in the world with you and yet you say you are "unworthy" of me. You have always loved me for who I am, you don't try to squelch me or change me and you are so incredibly patient, especially when I am not! I love how you wrap your arm around me every night and I fit perfectly with you. It is truly my favorite place, where I feel the safest and the most loved. I feel so proud when I'm out with you. Not only are you an incredibly handsome man to me, you are such a good person and I'm proud you picked me. Often I stand by your side in total awe that you are mine. The feeling can seriously overwhelm me, I swell with pride and love just watching you. I love your relationships with our "kids." We have totally different relationships with them, neither one of us is a better parent, just different. I can still see you holding each of our babies in your huge arms, kissing them over and over and soaking in their smell. Your tenderness with each infant was so incredibly sweet. I often tease you about our differences as parents but truly I respect and admire you. I love how you tip toe around me when you sense I might be sensitive or hurt by some criticism you want to offer me. I bet you think I don't notice your caution, but I do and I find the dance funny! You are careful not to hurt my feelings, yet I tease you mercifully sometimes. God matched us well. I love how you are quick to compliment, simple things like how you appreciate dinner every night or my packing your lunch or when you come home and compliment me on cleaning some mundane thing. (which is not getting done today as I type this!) I also appreciate your not criticizing when nothing gets done, like the days that are tough with kids home or I needed down time after a long school break or I just spent the day with friends. Your daily reminders that you are thinking about me when we are apart brighten my day and make me feel special. I love how you let me know where you are, what you are up to, etc. when we are not together. In our relationship there is so much respect and care for each other, we do much because of that, not because of obligation or expectation, but because we like keeping in touch, even when separated for just a few hours. Your simple texts of "XOXO" when I'm frustrated or upset about something give me much reassurance that you are there for me. Our humor and positive outlook on life is a strength I believe we have worked hard to make a part of us. We have lived some incredibly tough things, yet we laugh so much together. Our family could have fallen apart in some of the crisis times, but both of us are stubborn and strong. We took the challenges we were faced with and came out stronger, filled with more love and respect for each other. I notice the little things you do, from turning on my side of the electric blanket so it's warm when I climb into bed, to taking out the garbage or clearing the driveway of snow on a frigid winter morning. I love how you still open my car door for me, when I notice many men do not offer that kind of chivalry. I love seeing you get stuck holding a door in a crowd, like at a movie theater at the end. You patiently stand there as people pile past you, with barely a thank you being mumbled, but I want you to know, I notice, and I find it sweet. I love no matter how out cold you are in the middle of the night I can barely whisper "Markie, will you hold me?" and you roll over immediately to wrap me in your protective arm. I love your tender side, the love of our family cats and how you kiss them on top of their heads when holding them. I saw much tenderness in how you treated your Mom in old age. Your kindness was never more obvious as when we cared for her. I respect your practicing discipline on your saxophone and voice as you improve your craft. I'm not always thrilled when I've missed you all day and you disappear for another hour or so to practice, but I know it helps your soul and I do so love hearing your sweet music. You are a dear man Mark. I am sure this is only a small sample of the million plus things I love about you, but I wanted you to at least know a few... Thank you for picking me to spend your life with! I love you more!

P.S. and I love how you argue with me about loving me more, saying I must not know the meaning of infinity....I do, because I love you infinity.

Dear Mom

This is the letter my sweet husband, Mark wrote for his Mom's Memorial service. I wanted to share it:

Dear Mom,

I will never have to look very far to see or realize the lasting effects of your life on mine. From the car I now drive, to the saxophone I play, to the Christmas music I enjoy, and even to my wife’s name. And though the Toyota will someday be traded in and I might move on, the good lord willing, to a Selmer Mark VI tenor, I will always have the music you put in my heart.

So many Saturday afternoons of my youth were spent listening to Will Moyle’s Essence of Jazz show on WXXI, during which you would inevitably hear a tune that inspired you to walk over to the piano, pick out the right key, sit right down and launch into the song, singing and playing, filling the entire home with a joyful noise.

Sunday mornings meant off to this very church, good old Mt. Rise, to worship God, and to sing with the choir. Again, your beautiful voice would fill the sanctuary, and though shy, little Markie was often embarrassed by the fact that his mom was up there, seemingly singing above all the rest, I secretly was so very proud that you had such a beautiful, sweet, yet powerful and commanding set of pipes.

One might think that a young boy who had lost his father at such a young age, as I did, might have unpleasant memories of his youth. And yet, I have none of that. Our days on Red Fox Run were, in my memory, filled with happiness. And while I was well aware that the makeup of our family was different from almost everybody else’s in the neighborhood, I did not long for anything more than what we had; what you worked so hard to establish.

And perhaps the most meaningful lessons you taught me were in your last years. When you first came to live with us, I thought to myself, “this will be cool; Mom can hang out downstairs, do what she wants, we can visit with her and we’ll have a built in babysitter!”
I soon came to realize that that wasn’t the case. Taking care of you was often difficult and time consuming. But the experience was also rewarding and consequential to myself, Ellie jr., Beau, Teale and Gwenn. We learned that families ought to stick together, we learned to give back and we saw the grace of God moving in countless others who would out of the kindness of their hearts pick you up and take you to choir, out for lunch or to a concert.

Mom, I owe you so much. And yet if you were here I know you would say, “don’t be silly.” I will be eternally thankful for so many life lessons you passed on. Until my dying days I will remember the good times: Our yearly camping trips, waking up Christmas morning with the sliding door shut, calling out to Scott downstairs through the heating vents to coordinate our joint convergence on the presents under the tree, seeing you in the hallways at Jeff Road, tap dancing to “Put on a Happy Face”. God is good. Thank you, Mom. I love you.

MIL

She moved in with us October of 2010. We thought she'd live in our home so we knew she was safe, but be fairly independent. I had been running back and forth to her home, just ten minutes from ours,  many times over the year before the move. In some ways this was to simplify our lives. Having us all under one roof would mean only one home to shop for and to clean. It would mean she was here when I needed to drive her to an appointment or check to see that she was taking her medicines and refills were not needed. That wasn't the case. Immediately after moving in, it became apparent Mark's Mom had been covering far more than we realized. Mark's strong, independent Mom was failing. Her memory was going and so were her abilities to do much for herself. Mark and I had been thinking about my getting another job outside the home. At that time I was helping a friend's family with their father who was in a steep decline of Alzheimer's, but we were considering my adding hours or finding something more regular. We had talked about how we thought his Mom would be able to read to Gwenn and help her with her schoolwork. My Mother in law or MIL as I often refer to her, had been a school teacher in our district. The thought of having an extra parent in the home to help Gwenn was somewhat appealing, after all, we often felt like Gwenn got the short end of the stick in our busy household. Teale took much of our time, Beau had a busy sports schedule and Gwenn was often left to her own devices. Gwenn was seven at the time. Having Mom here to leave her with if I was stuck in an appointment with Teale and Beau wasn't available, was handy. It turns out we weren't really prepared for the reality of it all though. Gwenn would be caring for her Nana far more than the way we had envisioned. The idea of my getting another job outside the home, quickly faded when it became clear that leaving my MIL on her own was both not safe and not healthy for her mentally or physically. If she was left for a few hours after a fifteen hour night in bed, she would just sleep more. Sleeping was her preferred activity and concerning to all of us in the family. We talked much about her Parkinson's and Parkinson's dementia with her team of doctors. I had been taking her to most of her doctor appointments the year or so before her moving in with Mark and I. We had seen the decline, but her living in our home really crystalized how bad her mental health was. Was she depressed, trying to escape through sleep? She and I had shared the inability to shake the Winter blahs every year. We both were diagnosed with seasonal affective disorder or SAD, as it is referred to. Rochester, NY is a gray place in winter, the sun barely ever peaking out from behind the clouds creates a feeling of wanting to hibernate in many people. I had always been grateful Mark understood the condition because of living with his Mom before living with me. Mark knew if I had stayed in the house for too many days in a row, he should get me out and he was good at paying attention to how I was doing during the long winter months. That role became mine with MIL, I would need to keep her active, provide fun activities and sometimes that would mean fighting her to get up and dressed and go out with me. She would always thank me afterwards for pushing her, but the reality of becoming the parent of a parent is harder than most realize. The mental fatigue taking care of MIL was often exhausting. She was the least nice to me in those early months, turning on the charm for Mark when he got home from work, my feelings were often hurt. After all, I was there for her, day in and day out, but she argued or was passive aggressive toward me by ignoring requests to stay hydrated or get out of bed or even reminders to use the bathroom. Mark was gentle and kind and grateful to me, he kept me going by his love and support. As the months moved on MIL's demeanor changed. It wasn't sudden, but ever so slowly as she felt better because she was getting more interaction, love and care, she slowly became kinder to me. Those early months were the toughest, to let off steam I'd call Mark or text him and his response was always the same, "I love you." It was all I needed to keep going. MIL and I fell into routines, going to St John's Home, a senior care facility, to do sing alongs, I would take my friend's father with me also. He was a charmer and loved cheering up the "old ladies." His Alzheimer's was progressing rapidly though and soon it became apparent I would no longer be able to care for him and my MIL. They got along well though, so there were times I would take them both out and his cheery disposition helped both MIL and I feel better. I have many fond memories of those times. As the time passed and spring arrived in Rochester, I remember how it occurred to me that MIL had barely gone outside in her later years when living alone. There had been no outside furniture and she had not cared for her yard or done any gardening. So in my care I decided to get her outside more. On chilly days, I would bundle her up and set her up with a book in the sun and there she would sit, watching the kids play and the neighborhood come to life. She'd fight me about going out, but once outside, she'd tell me how lovely it was. As spring turned to Summer the back porch became MIL's second home, a rocking chair, a book, a glass of iced tea, she'd watch the many birds that visited my feeders or the kids playing in the pool or on the trampoline. MIL would watch me garden and tell me how beautiful my yard was. I knew those times were special, she was at peace. Our time together was precious in the end. I know Mark appreciated my taking care of his Mom and I appreciated the healing I experienced in my relationship with her. Our journey to the warm relationship we had in the end was slow, but God works in mysterious ways and in His plan, there would be peace...

Happy 15th

The night you were born I had no clue,
What on earth I'd learn from you.
The days I'd worry,
The times I fret,
The many people that I met.
Today you turn that magical year,
15 you are, it's finally here.
It's been a journey,
It's been a ride,
I've held on tight and I've wished to hide.
Someday I might finally see
The answer to your life was me.

The Doc's, part seven

It became evident that going home was the best choice. Teale was calmer, still not sleeping much, but there was a lot of hope the Lithium was helping her. We had several meetings about what to look for in side effects, how to help Teale if she became enraged, which emergency medications we could use that wouldn't counteract with her other medications, etc. Much was thrown at us, but by this point in Teale's life, we were a good team, Mark and I. We had our own plans and we both knew what we wanted for Teale, we just wanted her to feel peace. To be the parents watching the behaviors of your mentally ill child is one thing, it's beyond tough, your heart hurts constantly that you can not help your child. The other side of the issue though, is the child. Mark and I could not imagine what Teale felt? The pain inside her, the anxious feeling, the anger, the confusion and the frustration, all in this little girl that should feel nothing but love and joy at this point in her life. Often with mentally ill children, it has been my experience that people are not comfortable being open about it. Mental illness is still taboo, it's not talked about openly, making it seem or at least feel like somehow it is the fault of the mentally ill or of their parents. In our case it's fairly clear Teale's brain damage is the cause of her mood disorders. She does not have two brain lobes working together and that loss creates a lot of problems with regulating moods. Somehow this probably gives me more strength to be upfront and honest about how difficult her behavior can be. After all her brain damage was not my fault. Our friends and families are very kind and caring when Teale in tough behavior cycles, they are supportive and loving toward us. I think there have been times though that they have thought, she is too much and we should give up care of her. I have even had those times when our life has been so out of control, I just could not imagine continuing the journey. It just wasn't an option though, in my heart I knew if we couldn't take care of Teale, who could? Our love was (and is) deep, we balance each other well, Mark and I. We know when to take a break and if we don't know for ourselves, the other one knows for us. I have asked, no told Mark to leave the house, to get away, to take some time alone. He plays the saxaphone and music helps him, so I send him away to release through music. He has done the same for me. Making me spend time with a girlfriend or just by myself doing something I love, like gardening. There have been cycles of Teale where she demands our attention constantly and after awhile you are so burnt out your nerves are just raw from trying to keep her happy and even tempered. Dr Tom says that we have all developed PTSD because in bad cycles, living with Teale is much like living in a war zone. We are on edge, always on our guard and trying to stay one step ahead of the game. She is unpredictable, she snaps suddenly a fiercely. We worry constantly about who would take care of Teale if anything ever were to happen to Mark and I, but that is a whole other blog. I know that some friends and family in the worst of times just could not see the light. I know they thought Mark and I were living in hell and Teale was the whole cause of it, so why not just give her up to a group home? Even in the most challenging times, Mark and I had hope and faith that things could and would get better. We knew Teale needed us, not in a martyr sense, but because we truly loved her and believed that inside all that confusion there was much good. I will not deny there have been dreams of running away from all this. I have had times when having to restrain her that I have had to keep my anger in check to not hurt her because my anger was there too. In times like that I pray, I ask God to help Teale calm, I ask for peace, for calm in me. I ask God to be with me and help me to not hurt His child. I tell myself over and over agin, "This is not Teale, this is not her fault." Teale is without filter when in a rage, she is out for blood and tries desperately to hurt me. There is no thought going on, she does not think how wrong it is to want to hit, kick, bite, scratch, etc. her Mom. Often I find her rages start and in the middle of it, she is unaware as to why she is raging. It's a primitive instinct that kicks in and she just fights with all her strength, not even always knowing what provoked it. The weeks working up to the hospitalization in the psych ward was filled with times like these, intense rages constantly. All we could do was to hold Teale until she calmed. It was the only way to keep her safe, our other kids safe, our selves safe and the home safe. It's not pretty, it's heartbreaking to have to restrain your own child until she can calm down, but there was not any other choice. So going home was filled with the same feelings again, would Teale be constantly explosive? We had to take the chance though, so we rallied Dr Tom and Dr Dave and told them we wanted to bring Teale home. They would be our medical and our mental support again and they knew we would be relying on the both of them heavily while we tried to get Teale stabilized. By this point in our relationships, we had their personal cell phone numbers and we kept in close contact. The two of them, Mark and I, were all Teale had. We were her team, we would either get through this and help our daughter or we would have to find a different medication and a different plan. I was confident though, that I remember. I felt strong again after the two weeks of Teale in the hospital. I had a better perspective and I had slept, something that seems so simple, until you have not had enough. We were going to do this, we were going to make Teale's life the best we could and we were going to show everyone that she was worth the fight. She is a person, she is our daughter and she needed us. I was proud to be with a man who was completely my partner in this life. I was proud of us for not letting the stress of it all come between us. We were strong separately, but together I felt people listened and trusted us even more. So we went to get Teale...  (to be continued)

The Docs, part six

I hated the psych ward. I hated everything about leaving my daughter there. The people were nice, the nurses understanding and caring but once again I was being forced to let go of control. Letting go is not easy for most Mom's. I may be wrong here, but letting go of your child who uses very little audible language seems much more difficult on the heart. I was leaving my child, who talks in cryptic puzzles that I am forced to figure out, in many stranger's care. Teale often exploded out of frustration because she was misunderstood. How would people who did not know her obscure sign language, mixed with gestures and speech that was missing so many sounds, expect to help my daughter become more mentally stable? Her inability to be understood was the factor that caused the most meltdowns. My hope had always been that as she got older and could be better understood, the meltdowns would decrease. I never blamed her for her frustration, I hurt for her. That she knew what she meant and I did not was more frustrating to me than it was to her, I just kept my feelings in check. I often felt a deep sadness that Teale may believe I just don't care when I'm not understanding her, but in truth her wellbeing haunted me all hours of every day. I knew the abstract was missing in her comprehension. I knew she just could not understand the meaning of "tomorrow" or the concept of us being "out of something." I prayed the day would come that I wouldn't shake with fear when she asked me for something I did not have immediately at my disposal. I wondered how the nurses and the doctors at the psych ward were dealing with this. Teale often would suddenly ask for a random stuffed animal or toy that she had not thought of in years, she would expect Mark and I to know what she wanted and find it ASAP. Thoughts like this tormented me while Teale was at the psychiatric ward, would they just drug her if she went ballistic? It all ate at me, yet I felt it was my only hope too. She was lost and the Lithium may bring her back to us, it may help her to be a better person. I was (and still am) always thinking things could be better. If we find the right medications, if we find the right therapies or the right doctors, maybe, just maybe, we will someday find the miracle we've been looking for. The Lithium was started, the days progressed. We fell into a routine of visiting Teale after our long day running our in home daycare. I believe the staff at the psychiatric ward was more than understanding with our family because Teale was not their typical child. They usually didn't allow much visitation from family, but Teale's unique special needs were also not what they were used to dealing with. We worked as a team, trying to help our daughter, but also giving Mark, myself, Beau and Gwenn a break from the extreme difficult behaviors that Teale had been displaying in the months prior to her hospitalization in the psych ward. We knew she would be coming home soon, that she would still take much energy and time and we were realistic that this was probably not going to be the miracle we hoped for. We knew we needed to build up our strength and get some sleep under our belts. Teale's sleep did not improve drastically at the hospital, it showed signs of improvement, but it was tedious how little she improved. Soon we were talking about discharge, even though she was barely sleeping more than a few hours a night. The thoughts were she might sleep better at home in a place she felt more safe and secure. The Lithium was building up in her blood and we were getting closer to a therapeutic level. The insurance would start to argue against Teale being hospitalized and it would be difficult to prove the need. The visits to the hospital were exhausting, emotional and draining. We would see other kids who didn't seem to have much parental support and that was difficult to watch. Kids would attach to Mark and I when we were there, talking our ears off, as if they had not had an adult listen to them in years. We were watched while we visited, it was subtle, but you felt the cameras and the stares of the staff. Were they looking to see if it was our fault? I understood, yet considering it was this very hospital that caused my daughters lifelong disabilities at birth, it made me angry to have them judge me. I know once people get to know Mark and I they realize our devotion and our love toward Teale, but to have to prove that to strangers is unsettling. Having Dr Dave and Dr Tom backing us with years of care always helps me. There have been many times we have been put in uncomfortable positions with Teale being explosive in public. Knowing Dr Dave and Dr Tom have our back helps me hold my head high. They would never let a one time incident turn into a CPS situation where our care of Teale is being questioned. That kind of relationship is priceless in our life, the trust and the care between the four of us for the better good of Teale has literally kept me sane. Teale does self injurious behavior, like biting her own arm, the bruises attract stares, it's uncomfortable for Mark and I, but it's a sad, real part of our life. So as we visited our own daughter at the hospital, I remember how at first the idea of strangers observing our parenting skills really bothered me. I remember feeling like it was unfair that these 22 year old nurses who hadn't lived half of what I had, got to pass judgement on me. It was part of the journey though and in the end, I hope we taught more than they did. (to be continued)

Catch Up

I feel like I'm constantly playing catch up. The house work that never ends. The list of errands I should accomplish. The things I wish to do for myself, for my family or for my friends that never seems to get done. Days go by and I plug through, but then I look back and wonder what I did? Some days this hurts, it kills my self esteem, it makes me feel like I'm not a worthy part of this world and I'm not contributing enough. It's tough being an at home Mom. I know many people think it's easy and they are jealous, so I'm careful and I know in many ways I am blessed to be here for my kids. But let's be honest; the dishes, the laundry, the vacuuming, the cleaning, the dusting, the bathrooms, the cooking, the organizing, the paperwork, etc, etc, is unfulfilling for my soul. I accomplish it one day and the next day it needs doing again. Some days I feel trapped by the same old jobs that no one really notices or cares that I have accomplished. And before you get yourself all in a huff, I realize that many of you not only have to do all the same stuff I do, but you also have to work an outside of the home job too! I get it, we all have our crosses to bear. I am just expressing that often I feel like no matter how hard I try, my job is never completed and therefore I never feel fulfilled by a sense of accomplishment.

So, with all that being said. I've decided life is not just about the accomplishments. I've decided to live in a way I think I kinda have been subconsciously living. But now I hope to bring that living to a whole new conscious level.

My goal for each day will be to look back and see if I touched anyones heart? That is what I want to be remembered for when I'm gone. I've never heard anyone say at a funeral "Wow, she sure kept a clean house. or Can you believe she got all her errands run?"

Believe me, I'm still going to keep trying to get the things done at home that make life run more smoothly for my family, but if there is a choice to be made between some mundane chore that can wait and a person I can touch the heart of, the choice will be simple.

I hope to touch many hearts in my lifetime....