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Wednesday, May 13, 2015

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.... 

Thursday, March 26, 2015

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...

Thursday, March 5, 2015

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. 

Tuesday, February 24, 2015

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... 

Saturday, February 7, 2015

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. 

Tuesday, January 20, 2015

What's Really Important

There is a news story that has blown up and the whole thing makes me disgusted. A 5 year old child in the UK is being charged for not attending a Birthday party, with the threat of small claims court if they don't pay up. The boy's family had accepted the invitation, but then realized his Grandparents would be visiting and his parents kept him home. The mother of the Birthday boy sent home an invoice for approximately $24.00 to the family who bailed on the party. Is this because the Birthday boy didn't get a gift from that child? Does this Mother not have more important things to worry about? Being the Mother of three, Teale being special needs, I know much about how life can be extremely unpredictable. I've thrown several parties over the years where someone I surely thought and hoped would be there, suddenly bailed. It is life, stuff happens, people forget, sickness occurs, plans get changed.
I may be overly sensitive to the pettiness of this because our life can be so challenging. Also, I only just found out last night that a classmate of my daughter Teale, died over the weekend. A 16 year old boy passing suddenly can rock your heart like nothing else. It makes me wonder if the family of the Birthday boy has never struggled in life? How could anyone not see how incredibly selfish they are being? Does the family regret it now that the story has gone viral and their actions are being questioned by thousands of people? I haven't seen anyone stick up for the Mother who sent home the invoice, although, I'm sure there are some.
As my heart hurts for the family who lost their son at my daughters school, I can't help but wonder why we can't just be kinder to each other? We never know what each other is truly facing in life. I never saw Andrew as a particularly "sick" child. I knew he had diabetes, but his family seemed to be on top of it and as an outsider, he lived with it well. There is no known cause of death yet, but rumors are that he had the flu and complications from diabetes occurred.
Andrew was a boy who was quick with a smile and a hug. It's hard to believe, all of it..... I don't think anyone who has a child in their life, doesn't get the pain that our family and people touched by Andrew feel. The loss of a child is overwhelming, always. It is a universal feeling that a parent should not have to bury their child.
We all have "stuff" in our lives, I don't think "my stuff" is bigger than yours, but it is different. Living the challenges with Teale has changed us, as people and as a family. We know life is precious and very unpredictable. We've almost lost Teale a few times, starting with her unresponsive birth and each time I saw our mortality very clearly.
May we all embrace each other with love and kindness today, because in the end, the only thing important in life is each other. God Bless you Andrew, thank you for the smiles and hugs. You are missed.

Tuesday, January 6, 2015

2012 -2014

December 2012...I barely remember the "goings on" of that year. I know Christmas caught up to us and we let go of a tradition I greatly miss. We didn't condense life into a short letter, we didn't get a picture of our three kids together and we didn't stay up late into the night hand addressing envelopes and sending them near and far. I remember Teale being sent to the hospital emergency room for what looked like a shingles outbreak. She woke with a scab, oozing on her eye lid. Luckily my relationship with my pediatrician is quite close and I texted him a picture of it right away. His response was a bit shocking and we were off to the hospital. If it was shingles, she could lose vision and Teale already being legally blind, could not afford that. We spent the entire day at the hospital, she and I. Mark had to work, so a dear friend came and helped me pass the time with Teale. I was reminded several times that day how loved our family is. Prayers & help was offered over and over again. I received texts, calls, Facebook messages, e-mails, etc. offering us anything we needed while we waited out Teale's extensive examinations. It was a long day filled with much fear, as doctor after doctor looked at her. Eventually the news was good, it was not shingles but some type of a herpes breakout that just needed an ointment and an antibiotic. A day lost so close to Christmas put me behind even further. Than there was Gwenn, who needed oral surgery to split a double tooth. She had a double baby tooth and the dentist was hopeful the permanent tooth would be normal, but it wasn't. This required a team of dentists to split the tooth and do a root canal. Poor Gwennie was only 9 years old and in a chair with her mouth open for at least five hours. It was a complicated procedure, but she was a champ. Both Mark and I by her side. Another day lost plus the next day she was still worn and stayed home from school. I also had my Mother in law to care for in December of 2012. It would be her last December living with us. Her Parkinson's and Parkinson's Dementia had progressed quite a bit that year and by June I would know she had become too much work for our complicated family. She was very dependent on me, basically doing nothing without my prodding. Our home being a raised ranch, with the main kitchen upstairs and my Mother in law downstairs, it was a constant back and forth to check on her. She didn't get any food or drink for herself anymore. If it was up to her, she would just stay in PJ's 24/7 and sleep or watch TV. Honestly, I'm not sure she would have eaten or had any water if I hadn't been there. Taking in MIL on top of our crazy family was a challenge, but that's how much I love my husband! He needed his Mom safe and practically only trusted me to ensure that, so we moved her in and when the kids were at school, she was my job. I know we expected her to be much more independent when we moved her in, but we quickly discovered she had been "faking" much and really needed way more care than we had realized. The days always went by quickly in December, but since the birth of Teale, they seemed to be even shorter. Teale's Birthday being December 9th has always been tough. We go from Thanksgiving to Teale's Birthday, to Christmas, to New Years, to Gwenn's Birthday on January 13th, barely breathing until we are through them all. I can't even think about Christmas until after Teale's Birthday, so that December I was especially behind. We had thrown Teale a big Birthday party that took up much of the time I had after Thanksgiving. That, along with just the everyday care of a household and three busy kids, plus a needy MIL. Well, you get the idea, Mark wrote a letter, but somehow we never took a Christmas picture of the kids, so a tradition we had started with the birth of Beau, died.
2013 would turn out to be just as bad, if not worse. We threw another huge party for Teale, making 15 gluten free gingerbread houses for her friends to decorate. A few of the kids had Celiac disease, something I also have. I was thankful for my sister who helped me take on this huge project. As we were finishing up the construction of them on Saturday, December 7th for Teale's party on December 8th, Mark's sister called. Their Mom had fallen in the night, badly breaking her arm and was also being diagnosed with pneumonia. She was admitted into a hospital approximately an hour away from our home. At that time we did not know this would be our last week with her. After getting through the party, our efforts turned to Mark's Mom. Within a few days we would learn she was not going to recover. At the same time, I had become quite sick myself, a sinus infection going to my chest. Mark insisted I see our doctor and I was checked for pneumonia too. Needless to say, I could not make the hour drive to see my MIL. (mother in law) My being sick throws the entire balance off in our family. I usually just trudge through, but this was knocking me badly. Mark took time off to care for me and the kids, he also went to see his Mom at the hospital. The diagnosis for me was "just" bronchitis, antibiotics should cure me fast enough, but no, there would be a glitch. I actually started feeling worse on the antibiotic. I started having severe GI issues too, a common side effect of antibiotics for many, so I just kept taking the huge pill, three times a day. After a couple days it finally hit me, maybe it had gluten in it? I am Celiac and can not have gluten, whenever I pick up a prescription, I ask the pharmacy to check it for gluten, but because I was so sick, Mark had picked it up. Sure enough, a few phone calls later I found out I had been taking an antibiotic that contained gluten. When I accidentally get "gluten ~ ised" I can have many different symptoms, achy muscles, headaches or migraines, diarrhea, vomiting, it messes with my entire system because Celiac is an autoimmune disease. Anyway, a couple days of ingesting gluten did just that, it made me feel better in my chest, but I had flu like symptoms without a fever. By Tuesday, Mark's Moms recovery seemed dismal. We learned the Parkinson's had taken over her throat muscles and she was not able to swallow correctly. She lived for food, after all there was little else enjoyable in her life at that point. Her ability to carry on conversation had been gone for quite some time, reading was confusing, doing her beloved crossword puzzles had ceased, even just walking was difficult. Ellie senior was almost 86 years old, her mind and her body were shutting down. The doctors told the family that even if she did recover, it would be a constant cycle with her now, pneumonia, that is. Because she was swallowing incorrectly, the pneumonia would come back, not might, would and she would suffer this repeatedly. By Wednesday we knew we were going to lose Mom. It was a fast decline from, at first, just seeming to be a badly broken arm. By Friday at 11:30AM, she was gone. Mark and I there at her side, as she slipped away. I can only speak for myself on this, (and a little for my husband, as we talk extensively) it was an honor and a privilege to be there. She had become family in those years living with us. Yes, I had been married to Mark over 24 years when his Mom passed, but it wasn't until those years living with us, did I finally embrace her and visa versa. No one was good enough for her kids, so I had not had a chance in hell, but something changed between us in those twilight years of her life. We grew to truly love each other, it was a God thing, He had created the circumstances that helped Mom and I to heal before she passed. I have no regrets of that time in our life, Mom being here in our care was and always will be one of the best things I have ever done. My kids and I all learned much from that experience and my husband was, and is, eternally grateful for that time. Gods plan had been perfect...
The memorial service for Mom would be the following Saturday, December 21st. Mark had barely been to work the week of my illness, his Mom's decline and now with her death, he would have the week off. Christmas plans were being shoved further aside, so we could give Mom a proper memorial service. We also hoped to spend time with the family that came into town for the service. All went off beautifully, not without drama, but it all worked out in the end. So, once again in 2013, the Christmas letter and picture never happened.
2014 has slipped by too. Teale had been in one of her most horrific bi-polar cycles most of November and the earlier part of December. Her behavior was so "off" we were barely surviving her. Explosions were odd and harsh, her quick changes in temperament made us question everything from sickness to seizures. We were in touch with her team of doctors and we saw each of them, plus her neurologist, just not sure what was going on. She had strange staring spells before the rages, she was self injurious very often at home, biting her arm so much, there were scabs and bruises on top of each other. It was just heartbreaking to watch. Teale is much bigger than me, in both height and weight and because she has no filter when ragging, I am in extreme danger. Mark felt the need to protect me during much of this awful time while I worked with the medical team to get "our Teale" back. By the time we finally came to the conclusion that Teale was manic due to her medicine levels being too low, we were well into December. The increase kicked in just in time for Christmas break, but the weeks leading up to that were really awful! As of December 19th, I had not shopped for Christmas at all. Somehow though, it always works out. I had decorated, put up the tree and hung the ornaments, plus put out all my other decorations on my own. Mark and Beau carried the boxes to me from the crawlspace, but otherwise, the family really did not help. We were sadly broke and were not even sure how to pay for Christmas gifts, when a couple miracles happened, unexpected money appeared. So on that Friday before break, I shopped late into the night and by Sunday night I was in the best shape, ahead of Christmas, I had been in in many years. I wrapped on Monday and Tuesday, evaluating the gifts and filled any gaps. I was going to get to bed at a decent hour on Christmas Eve after our celebration with my family. It sure felt good to be so ready! I was able to enjoy a few days and not be so stressed out, except for the fact, I had not done Christmas cards, again! That hung heavy over me, but not heavy enough to force myself to do them. This year I still plan on catching up, yes, it is past Christmas and even past New Years, but my desire to get back into that tradition has not faded, so, although they will no longer be Christmas cards, I do plan on getting out cards to loved ones near and far...