The Good, The Bad & The Ugly

I'm not going to deny, this week has been hard to process. I'm struggling with what we are dealing with and what to share. I'm usually blatantly honest, but there are times, even I don't know what to say. The truth is, I needed the last few days to be lifted by prayer and to understand it all a little more.  On Monday we were told that Teale's kidneys are beginning to fail. The medication that helps to stabilize her moods, Lithium, is damaging her kidneys. I was alone with Teale at the appointment that this information was presented to me. Mark is in a "new" job and we are being conservative about him using "vacation" days. It is a tough time to be frugal about days or even just hours off, because we are in crisis and we need both of our heads in this game. Lithium has stabilized Teale since her very first "manic" break, in first grade. It hasn't been perfect, hell, it hasn't even been good some of the time, but it is all we know. It has been what has helped her to stay fairly even and what we understand, thoroughly. We know the side effects, we know the symptoms, we know the reactions and we know the levels.
Many years ago I spoke with a doctor who, I believe told me, he was the first subscriber of Lithium in this country. He gave me some candid advice, "It is toxic, get her off of it." He advised me that marijuana would be a much safer drug. Of course in NY that is not an option. We are getting there, but it is not even close to being a drug I can count on for Teale, yet.
His words stung, "toxic" has gone through my head much. I put my daughter on poison. But you would have to understand what she was living, what my other children were living and what Mark and I were living. We were desperate and we wanted relief. We wanted "normal"& we wanted happiness, for all of us.
Lithium was discussed and with the promise and hope of a more stable child, we jumped. Ten years later, I can not regret the move completely. Teale has had much joy in her life because we were able to get her more stable, but it has run it's coarse and now we must move on...

Prayer Request

When my heart is heavy, writing helps. Sometimes I can express my feelings in writing better than in speaking. Sometimes getting the thoughts down helps me to process the pain, worry or confusion that I am experiencing. Other times I feel like God talks to me through writing, the words spill out faster than my thoughts and soon the story is written, but I can barely remember what is on the computer in front of me. My pain is intense today, I'm sitting on much uncertainty, which makes it tough to share. I need answers, I need clarification, I need to process all the information that was thrown at me and I need to cry, more...
Our Teale has had so many challenges in her life. She has fought and won, again and again, both medical and educational battles. She has been my daughter, but she has also been my life. My soul has been changed because of her. Not one other person in my life has taught me more. Mark is a close second, but he doesn't challenge me like Teale does. Teale teaches me to believe in the unknown. She teaches me to love, even in moments when you would think that were impossible. Teale has taught me to research and question authority. Being her advocate makes me look at every angle before making a decision.

So as I try to process and gather more information, I will also try to wrap my head around what our next step is. I like plans, I like directions with purpose and I like to be in charge of my destiny.

I know we will figure this out, Mark and I are a good team and have worked through many times of crisis. We will move forward! I know I will share more when I feel more confident in what I know, but for now; Please pray for our daughter, she needs all the help she can get. 

Why Do Those People Have Children?

For weeks, my head has been spinning with things I've wanted to write, but thoughts are often tough to get down on paper and with working part time, my time has been limited more. I spend much of my "free time" at doctor appointments, running errands, cleaning, cooking, etc. The balancing act is still not perfected and I often feel overwhelmed and torn by "what I should do and what I wish to do." Writing has taken a big backseat, even though I believe it is essential to my personal wellbeing. It centers me and helps me sort out problems, figure out solutions and celebrate victories. Honestly, my core feels "off" without writing. Facebook fills some of that void, I do share daily struggles and victories there often, but here I share more depth. Today, I am choosing to ignore the many things I should do, because I need this. I need to get something off my chest and I am interested in others views on this topic....

Yesterday I ended up in a very uncomfortable conversation, my reaction was not what it should have been and I've been really bothered by the words both said and unsaid. To understand, you will need some background, but to protect the people involved I am not sharing the story completely.

I was talking about a family I know that has a young child who is not yet diagnosed with a specific special need. The child displays many issues, but the journey is just begun and the puzzle pieces have not been fit together yet. The parents of this child are said to be developmentally delayed themselves, (I personally do not know the parents, but the source I got this from, I trust.) so that may be part of the problem with figuring out the child's needs. The parents may need more support than they are getting in this journey, but developmentally delayed or not, we all need more help in the journey of parenting special needs children! It's a hard road, one seldom traveled before you are thrown into the fire! I have learned much over my years as Teale's Mom, but I still have much to learn. Each step forward, has it's steps backwards or sideways. When a new diagnosis get thrown at us, when glitches in medications happen, when illness strikes or as we wade through the unknown as she grows and matures. It is a learn as you go life, often we are just surviving and sometimes barely.

Mark and I are a good team. We work well together, we both try to remain calm through the unknown or a crisis. We think ahead much. I think ahead more... That's why the conversation I had yesterday has been haunting me. It is something I have ruminated on much too much, but it is real and something I need to come to terms with, just in case, I am faced with it.

The conversation was around the child not getting all the care she needs to deal with an issue. The person was kinda bashing the family for the "neglect" in the problem. I then shared that the child's parents have some developmental delays. In my head, I shared this to help the person I was talking to understand the situation in a different light and to have some compassion for the family and their struggles. Instead she said ~ "Why do those people have children?" 

I had nothing, I said, nothing! I'm embarrassed and ashamed.

I've been stewing since, I've tried to replay the scenario, but with me saying something profound, yet, I still have not found the right words. I think it is because it hit a real cord in my life that I fear, deeply. I have a daughter who is developmentally delayed. I have thought long and hard about the "what if's" of an accidental pregnancy for her. I have worried about her being taken advantage of and I have stressed the consequences of a pregnancy because of such a situation. There would be much risk involved for both Teale and a baby if Teale became pregnant. It is a real concern, the world is cruel and rape is real. I am not and will not be with her 24/7, so the concern is there. At this time in her life she is sensory defensive, so the chances of her having a consensual sexual relationship is remote, but this may change too. I am anything but naive to the possibilities of Teale maturing enough to have a relationship, but, honestly at this time, I don't see it happening.

Teale is on so many medications that if she were to become pregnant, the medications would cause harm to her baby. She could never care for another person, so Mark and I would be parents again. She could not get through a delivery with any understanding of what was happening to her. To take her off her medications to ensure the safety of the baby would put Teale in great harm and possibly even cause her demise. Like I said, I've thought long and hard about all this. It is not a comfortable conversation, but I've had it, with doctors and more importantly with my husband, many, many times. I personally am not a supporter of abortions, but please don't misconstrue what I am saying here. I personally am not a supporter. That means for me personally, I would not get an abortion. I believe in pro choice, I believe in the right to choose, but personally I don't believe in abortion. In the case of Teale though, I would have to choose her life or a babies life, either way would be a huge loss. Teale can not give up her medications, her seizures and behaviors are too severe without them. A babies development and growth may be adversely affected by her medications. So as you can see, this is a no win situation. My only defenses are to be vigilant in Teale's care and to keep her protected against accidental birth. It's a cruel world, this is a tough subject, but I have not backed away from tough subjects. I have even asked about the possibility of permanent serialization for Teale. I have much guilt and angst over the subject, but I am protecting Teale and my family from much future pain by having discussions and a plan.

So back to yesterday's conversation ~ "Why do those people have children?"

What I wish I had said ~ "Maybe for the simple reason that it is a God given right to do so?"

And theres the rub, am I taking away a basic right of my daughter or am I protecting her and all of us? Only God can say.... 

Too Honest

I've been called out several times in my life as being too honest. I am an open book, if I feel it, generally I say it. It is a quality either loved or hated. If asked a question or my opinion, you will get the truth from me, even if it is not really what you wanted to hear. I think over the years I've mellowed some, mostly because Mark is the total opposite of me. He is thoughtful to a point, he never rushes to judgement or says anything off the cuff. It actually drives my immediate family crazy how thoughtful Mark is as he speaks. What takes an average person a couple sentences, Mark stretches out and takes his time explaining. I think the toughest calls Mark has had to make have been concerning the births of both Beau and Teale. He had a tough time knowing what to say, they were alive, but the births were rough and the future uncertain. I've asked him over the years what he said and the reactions, but much is a blur at this point. I believe Mark is a good match for me, he slows down my thoughts and helps me to see different sides to things. I also believe I am the same for him, I get him to think out of his box. Over the years I'm sure we have rubbed off on each other, but still there are times I want to blurt out exactly how I feel and Mark has to hold me back. Recently I took a new job, learning the politics of this environment has had some challenges for me. There are obvious flaws in the system and much the administration seems to not see or ignore. Since I have worked for myself most of my life, it is tough to hold back my "too honest" comments.  I run practically everything past Mark, but me, being me, I have slipped a few times too. The other day I said something that obviously everyone knows, but choices to ignore. I'm not sure my honestly was welcomed. I may need to channel Mark more!
I took some time to get to know the people before opening up. After a month there, I have started to share more about myself, my experiences and my opinions. Today I have a meeting with my supervisor to discuss how things have been going. I know there are many things I love about the job, but there are also many things I think could be improved. It will be interesting to see if the real me comes out or if I am more like my dear husband, Mark...

Twenty Three Years Ago

Today is the day my Father died in 1992. The last few years of his life were the hardest in our relationship. I had married in 1989, not having my Father give me away, not even inviting him to my wedding. He had not met my husband before he passed. He wasn't a bad man, but mental illness had taken over the man I once knew and I was unsure how to deal with him. His words were often hurtful, his behavior was erratic and strange. I tried stopping by his home to check on him a few times before I started dating Mark in December of 1988, but it was too unpredictable and painful. Sometimes he was kind and welcoming, other times he was drunk and nasty. Alcohol was his self medication in those later years. He would have benefited from psychiatric help, but in his mind, he was fine. My love for him was strong and I wished I could help, but after a visit in the late 1980's, I consciously decided "enough was enough." He would have to be well before I could see him again. I walked away not knowing that day would never come. I walked away not knowing I would never see him again, but I walked away knowing I had to walk away. I could not solve his issues, without his wanting to. Today is the anniversary of my Father's death, but he had really been out of my life since that day I left his house crying. My Father was sick and I couldn't talk him into caring enough to get help. I can pretend like it was easy, the day I walked away, but that would be a lie. When I speak of my Dad's mental illness/alcoholism, I probably sound cold and callous. Inside I hurt a great deal, inside I wanted my Dad to care about me more than he cared about alcohol. I wanted him to see the value of our relationship and realize he needed help. I wanted to be important to him. If you are the child of an alcoholic, I'm sure you understand these feelings. It is pretty universal to want to feel loved by your parents, but in my case, mental illness and alcohol took my Dad. I walked away because I knew he had to want to get help. I walked away because I knew I didn't cause his illness and I could not solve it. I walked away and I built a life for me with my husband, always hoping that someday my Father would be well enough to meet him. Mark never met my Father, but that is ok, because if he had, he would have met a man I didn't care for. My Dad died alone, in his favorite chair, with a drink in his hand. The coroner would rule his death a heart attack. The call would come from a stranger, a neighbor of his, I didn't even know. My chance to heal our relationship was gone in that instant. Twenty three years later I still question my actions, could I have helped him by staying in touch? Would I have had him in my life longer, had I tried harder instead of walking away? It is true that a child of an alcoholic takes on much blame for their parents actions. I know I have often wondered "what if?" Twenty three years ago I lost my Father and to this day the pain of that loss still catches me off guard. 

Losses and Gains

I started a new journey this week. I am working the next few months as a 1 on 2 aid in a prechool. The boys I am working with are both diagnosed with Autism. Yesterday was my first day, so truly I haven't processed much. I imagine it will take me a week or two to know how I feel about this new position. But one thing already struck me hard and I am not surprised by these feelings, grief. Grief hits all of us who are parents of children diagnosed with special needs. Grief does not just hit once, it hits multiple times in the journey. I have experienced the feeling of loss so many times, it would be difficult to count. From the moment I was told of her condition in utero, to just last week, when Teale was with me on school break. The losses can be small and they can be gigantic, but the feeling is always the same, a gut wrenching sickness deep in my soul. The fact that she is 16 and not learning to drive hurts or the fact that she isn't a pain in the neck teenager out pushing the limits of my parental boundaries. It's funny how you even miss the age appropriate, challenging behaviors. I miss a houseful of girls sleeping over, talking about boys and how their parents don't understand them. I miss her staying out too late, testing the curfew, I miss the backtalk when I ask her to do something. I miss a lot of things as I raise Teale to be the best person she can be. Which brings  me back to my new job. These parent's journey has just begun and those beginning years are quite possibly the most hopeful and when you experience the biggest losses. Teale was going to change the world and in many ways, I do believe she has. The thing is, I had dreams, dreams that were bigger than anyone could imagine for my severely brain damaged daughter. Teale has become what she was to become, maybe not quite what my dreams were, but an amazing human. I can still feel the intensity I felt though, as a new Mother of a daughter who was slowly being diagnosed with one issue or another. The labels started slow, first was cerebral palsy, then  seizure disorder, deaf, then legally blind, they kept coming... As soon as I could grasp one, a different specialist would throw another our way. I not only had to try to learn all I could as the diagnosis came in, but I had to teach others in our life too. Family and friends needed to understand, but also, at times, Mark and I would purposely hold back information. We had strong feelings that the less people who knew the severity, the better. After all, if you expect a child to be less, because of severe brain damage, might that prediction cause less to be achieved?
 Teale has surprised many, she has done far better than doctors expected or predicted, but the losses are still tough to overlook. I, for one, ALWAYS expected we would overcome the lack of use of Teale's right arm and hand. I was sure we could get her to use it in a normal way by now. That has not happened. It is a loss that is in my face every single day. I have tried to forgive myself. But there will probably always be some level of doubt, that I could have done more. If only I had tried more therapies or worked harder with her when she was a baby or researched this or that, Teale would use both her hands. This is part of the grief that I experience daily. This is part of the pain I know new Mothers will go through.
Being with a family as they start this new journey, I pray that somehow my years of experience can ease their pain. Helping these two young boys find their way, even for just a fraction of their life has to have meaning. I'm sure this is not a coincidence that I fell into this job. Remembering what it was like when Teale was a preschooler swims in my head much. I remember the hopes, the fears, the feelings of being alone, but I also remember the many people that held us up in those heart wrenching times. I would have surely fallen without their love and support. If nothing else, may I pay that forward... 

Valentine's Day Lover

I know a lot of people hate Valentine's Day, but I am not one of them. I've loved Valentine's Day since I was a little girl. Maybe the promise of cards and treats at school started my love of the day? Maybe the break from the Winter mundane is what sparked my love of the day? After all, to me, it is just a simple holiday stuck in the middle of Winter that simply celebrates love. Or maybe it is because I have always adored hearts, the shape moves my soul. That may not makes sense to a cynic, but I can't remember a time I didn't adore hearts. Especially in my days of running in home daycare, I would share my love of hearts with the kids. Doodling hearts, making paper snowflakes with hearts intertwined, creating art with hearts, I often make heart cakes for birthdays, hearts have always lifted my soul. I am also attracted to anything & everything with hearts as the theme. I even have a Pinterest board entitled "hearts."
Just a few years ago I decided to make hearts the focus of our front door foyer. As soon as you enter our home, you see something that is very much me. I purchased art from an artist friend as a gift for  Mark one Valentine's Day, some years back. I had the idea that I would create a "wall of hearts." Last year I finally created this vision and then painted my own special "heart"for Mark on Valentine's Day. It's simple, but it completed the front foyer, a perfect reminder of my love for the man I married. Many years ago Mark wrote and recorded for me a song. I do not have his musical talent, but art has always been something I enjoy, so even though my painting is simple, the message is loud and clear...

I guess I will just have to agree to disagree with the many who hate Valentine's Day.
For me, Valentine's Day has always been a simple holiday, in the middle of the bleakness of Winter, that my heart gets lifted. Besides that, it was Valentine's Day in 1989 that Mark asked me to marry him and that decision has forever changed my heart.