Strong Willed

It's been several weeks since the nephrologist threw at me the words "kidney failure." The shock in that moment, more pain than I could share. It took me days to process and move forward. It took weeks before plans got set and we knew how we would begin to get our daughter healthy again. There were no guarantees, if anything, the doctors were actually preparing us for the worst and not giving us much hope. Would her kidneys heal? Would she be able to live a typical, healthy life or was this the beginning of a very long and painful road? Mark and I have faced fear before, fear of not being able to keep Teale healthy and stable has been a constant for both of us. I mostly struggle with whether I'll be able to continue to give quality care to my daughter without risking my own wellbeing? She's much bigger and quite frankly, stronger than me. I often think about if I can keep up this level of care, forever? But, if you know me, I am nothing, if I am not strong willed! I believe that's just a nicer way to say "stubborn and strong!" It's gotten me through this life with Teale though, so I'm not putting a bad spin on the words. A weaker soul may have crumbled under the stresses. For me, it just made me dig in my heals and fight harder. Teale is much like me in this way, "strong willed," has saved her life and brought her through many challenges. So here we are, weeks later, through, what I hope, was the worst of it! Teale seems pretty stable, mentally & physically. I'm hopeful some healing has taken place and we can put the words "kidney failure" behind us. Now if I could only get past the feeling of "what is next" in this incredible journey as Teale's Mom? 

When Fear Overrides Faith (part two)

The daycare changed, life changed. Our focus was tough to miss, our daughter became a job within herself. As time consuming as a baby is, nothing compared to the amount of work it took to care for Teale. She was in the NICU for two months and all the while we still cared for all the other families we had in our daycare. Coming home wasn't much better, doctors, therapists, meetings on early intervention, sleepless nights, tests, doctors and more doctors. It was hard to believe this tiny infant needed so very much. We were run ragged and if I had it to do over again, well, it might be different. I look back on the early years, the beliefs we would change what the doctors said about Teale and I wonder, did I need to fight all those fights? I believe she is far better because we fought hard for her and exposed her to much, but I also wonder if I could have sat more, loved her more and just been present, as a Mom? Did I need to argue for that extra half hour of sign language instruction? Did her PT coming four times a week instead of two or three make a ginormous difference in Teale's abilities? Could I have done more, done better, could I have tried more homeopathic remedies, could I have traveled far and wide for healing? Life became about Teale, it became a lot of work and thought to parent her. Our family focus was on making her the best we could. I often wonder how Beau survived, how our marriage grew, how we didn't all retreat into ourselves and the loss we all experienced. Were we kind to the many people who held us up? Did we thank you? Did you know how much we appreciated your rides to the hospital, your home cooked meals, your visits? Did you know you were not just helping, but you were holding us together, like the duct tape of life? There was so much love offered to us, it's tough to recall, all the gifts, not just material ones, but especially the prayers and the time given to us. My sister took endless vacation days to help us in our daycare so we could go to the countless doctor and educatioal meetings. It wasn't like we just needed a couple months of help, we've had crisis after crisis and every time, people have stepped up and helped us! I think about how shell shocked I was in some of those crisis times, often I became stoic, just pushing through. Did I thank you, did I even acknowledge your sacrifice for my family? I wish I could go back and tell each and every person who showed up on our doorstep ready to roll up their sleeves, how very much I believe you are the people who changed what Teale could have been, to what she is. The prayers from near and far, the notes and words of encouragement, they lift us and keep us going. When my faith falters, my friends and family lift me. My fear was more than I could even put into words this past Monday. Teale was horrible, she was edgy and uncomfortable in her own skin. Her anger constant. I was looking at a school break alone with her and the fear was taking over my faith that I was going to be able to do it. I then asked for prayers on Facebook and whether you believe it or not, I believe that was a game changer. This week has been nothing like I feared. Sure there were a few tough moments, but faith finally took over for the fear I had felt. Faith has carried us through so many challenging times. Mostly because so many of you, believed in us and gave us faith in ourselves. I know I owe so much to so many and quite frankly, I also know our needs for support will probably never end. Keep the faith friends and when you can't, just know you can reach out to others and be lifted until you believe again.

When Fear Overrides Faith

When fear overrides faith, I woke realizing that was what had happened to me on Monday. The kidney issues, possible failing kidneys, possible Diabetes Insipitus, had brought my husband and I to the only choice of weaning Teale off Lithium. We had to wean Teale off her Bi-Polar medication she had been on since she was six years old. Lithium was the only medication we had known for the last ten years. We knew she needed a slightly higher dose during typical times in the year that Bi-Polar people went manic. We knew it had stabilized her and brought her back to us. We saw hope in Lithium, we saw peace in our daughter. We knew the side effects, we knew the warning signs if it was too high or too low in her system, we knew Lithium. Life without Lithium seemed pretty much unfathomable.
So when it was first suggested that Lithium was the cause of physical harm to Teale, we had to make what seemed like a choice between, mental stability and physical stability. We chose physical, hoping we could also someday get her back to mental stability. For both Mark and I, it was an obvious choice, but with this decision, I believed we were in for a very bad ride on the mental health roller coaster. I believed it could be an extremely long time before we achieved the mental stability we had finally achieved about five years ago. The cocktail of drugs (medications) Teale took was specific to only her. The Lithium had helped, but it wasn't until we found an antipsychotic medication about five years ago, did Teale seem the best she might be able to be. It's never been perfect, but if you knew Teale before medications, you know we made the right decisions pursuing the right combo of medications.
Our journey to get Teale mentally stable started when she was about four years old. The explosive behaviors were confusing and tough to manage. Her violence was dangerous and very scary. Doctors "admitted" children with cerebral palsy can have a very tough time regulating moods. With the brain damage being so severe in Teale, no one was sure "what these violent outbursts were?" It could be seizures, something she was not in control of. It could be just the inability for her body to regulate moods because there was no connection between her two lobes in her brain. It could be frustration, over her lack of good communication? It could be her lack of using her right arm caused frustration and anger? There were hundreds of things thrown at us, mental illness, our parenting, her need for more structure in her life, being in the wrong program, our lack of learning sign language fast enough, seriously, the list was endless. Of course the most difficult possibility was that her explosive behaviors were somehow our fault. Blaming Mark and I seemed like the easiest, most obvious answer for many around us. Statements like, "All she needs is a little discipline" will forever run through my head, destroying my confidence. It's hard to believe I took such a cruel, ignorant comment to heart, but Teale was my first crack at a severely brain damaged kid. She was my first child with Cerebral Palsy, Epilepsy, profound hearing loss and a diagnosis of being legally blind.
My girlfriend recently drilled a statement into my head that I think about much, "You only know, what you know." A child like Teale, I had never known. Let that sink in. I had a child I had to try to figure out, without the knowledge of child development helping me. Mark and I had run our in home daycare about ten years when Teale was born. I had been a Nanny, a babysitter, an Aunt, for years before that. I had over fifteen years of working with young children, years of a deepening understanding of the "proper" ways to help develop confident, happy, well adjusted children. I took several child development classes, I read many articles and several books. I educated myself in new ways to help achieve success in my chosen career of childcare. I wanted our daycare to be nurturing, safe, loving, a well run home, where children could feel free to be themselves, so long as there was respect for others. Our daycare was an extended family, each and every child there had a piece of Mark and my heart. But then Teale was born....

(part one)

The Path to Health

Is there anything more exhausting than worry? It consumes and shows it's ugly head in so many ways. For me, worry pops up in my sleep and eating habits, I sleep less and I eat more. I look for energy in foods that ultimately just drain me of energy. I crave sugars and mostly "comfort foods." Right now I hate my body and basically that feeling seeps out in many ways. I'm so uncomfortable in my own skin and find it difficult to dress daily. Right now, not much fits me, so I stare into my closet of clothes wishing I could wear this or that. I've heard cortisone levels go up with stress, I kinda doubt mine are ever "normal." There are few, if not, no times, in our life that there isn't some amount of extra Teale stress going on. School breaks are tough, holidays are tough, everyday living has many unforeseen challenges. Everyday tasks that need to be accomplished with Teale, can be fun or they can be a nightmare. Her moods change on a dime. She is sweet and cooperative one minute and the next she could be raging for what appears to be "no apparent" reason. I'm a stress eater, always have been. I guess I make excuses for my stress eating. My mind makes excuses ~ "Eating is better than some of the other bad habits I could pick up." I've seen much alcoholism and many drug addictions in my lifetime. I've also seen a lot of generally miserable people, lost in their own worlds of depression and self medicating. Maybe they don't have support or love? Who knows why some of us deal with life in one way or another? I often feel blessed because I have Mark, he helps keep my spirit from falling when the pressures mount. He doesn't criticize or judge the many thousand times my body has changed in the course of our lifetime together. The only thing important to Mark is my well being. He loves me and shows that deep love always. The catch though, is that he knows I am happier when I am healthier and a size I am comfortable in. So as we go through all the new medical and mental issues with our daughter, I have decided that as stressful as it is to get back on the path to healthy, it is more stressful, not to. 

3AM

I think this is the third time this week I've woken at 3AM and could not fall back asleep. The other two times I ended up on my phone reading news and scanning FB. I know getting on a device can just cause you to stay awake, so I usually avoid it for awhile if I'm awake. But my mind was flooding with scary thoughts, so I figured it was a distraction. I'd get sleepy again, set it down and then my mind went back to my fears. I'm not sure how Mark is sleeping, maybe he's waking too, during the hours I sleep? I lay there listening to him breathe, thinking how grateful I am to have him as my partner. We've been challenged much, but it never effects "us." We are still able to have fun when given the opportunity and be a comfort to each other. It's been a rough month or so, finding out our daughter's kidneys are failing, that she is probably struggling with a condition called Diabetes Insipitus and knowing we must get her off Lithium ASAP. She's been on Lithium since she was a mer six years old and for the most part, it's been a good medication for her. Her first manic stage was horrific, at six, she only slept approximately two hours a night. Because of her severe developmental delays, one of us was up with her at all times. The exhaustion built up and we were barely functioning as this continued and days turned into weeks and months. Of course her doctors were working with us this whole time, but you have to understand, sleep deprivation causes your mind to not believe everything. We questioned whether we were crazy and she was sleeping more than we reported? We tried several sleeping medications under her doctor's care, but still she was awake and functional all but two or three hours a day. Mark and I doubted ourselves as the sleep deprivation took hold of our minds. It was like we were in some conspiracy theory, other people doubted what we were saying, doctors, Teale's school, friends, family. No one could believe she was only sleeping a few hours, yet had so much energy day in and day out. You stop believing yourself when no one listens or you just stop even trying to tell the truth. We were sure, sooner or later, she would HAVE to sleep and or one of the many medicines would work. It wasn't until Teale started having unique seizures during the day at school that anyone finally really took note that something was wrong. Sleep deprivation causes seizures in people with Epilepsy and Teale had never had day seizures. He brain damage has somehow only shown it's ugliness at night, once she is in the sleep cycle, her seizures appear. At that time in her life, her seizure disorder was not well controlled, but it was not out of control either. Day seizures and the type she was having were totally different from her normal. In seizure disorders, generally people only have certain kinds. If the seizures change, it causes alarm, so at this point doctors were concerned and realizing we needed a better plan. I knew Mark and I were at the end of our rope, working all day and watching Teale all night was frying us. I remember turning to him and saying, I know I won't do it, but I'm as close to suicide as I could be. The whole truth was that I was fantasizing about taking Teale and driving into a truck or something, to save Mark from the pain of life with Teale. I knew I was getting psychotic because it all made sense and seemed merciful. Sharing that with my husband and Teale's doctors got action. They decided we had to hospitalize her, so someone else could evaluate her 24/7 and so we could sleep. This is why my fears are so high right now, ever since that hospitalization, Teale has been diagnosed with Bi-Polar Disorder and was put on Lithium. The Lithium worked and our daughter started to sleep again. The validation that she was not sleeping helped Mark and I immensely. We no longer thought we were the crazy ones and understood our daughter's severe brain damage had caused mental illness too. It would not suddenly be easy with Teale, but it certainly helps to know what you are dealing with to treat it. Ten years later, her kidneys can no longer handle filtering the Lithium and we are weaning her off. It's ironic my fear is showing up in inability to sleep. I know Mark and I are stronger, more educated and we trust ourselves much more as people and as Teale's parents than we did ten years ago. I know we will make the best decisions and we will survive. I also know, I'm scared, I'm mad at God for allowing Teale to suffer more and I'm tired. So if you get the chance, please lift us in prayer, because in my heart, I know I will feel your love and support and Teale will be ok. 

Sharing, just because, her smile is contagious!

Sometimes you just need to see the joy....

Special, Even in the Special Needs Community (part 2)

Trying to figure out how to do that, I suddenly knew I was in deep. I grabbed her arm into a twist behind her back to lead her to the couch. I knew Gwenn was in danger if I didn't act quickly. I was picturing cookies flying, Gwenn and her friend attacked, maybe a counter 'being cleared,"my strength grows in such a moment. Protecting others has always been Mark and my main goal. He and I can take the physical and mental abuse, but we never want her to "get others." It may be because we know her attacks will pass and in the end, he and I still love her just as deeply as before the rages. The thing is, we just don't know if others are capable of that kind of forgiveness? I'm sorry to sound like a martyr, that is not what I mean, it's just that Teale is ours and we get the pain she lives. Often in those horrific rages, my mind goes to picturing her brain scans, they are severe and picturing the compromised brain helps me to remember compassion and love and most of all, forgiveness. This is not her fault, she didn't choose this life and neither did we. Doctors's errors caused her brain damage and those doctors, well, they have no connection to the pain we live because of incompetence. I grabbed her arm to lead her, but she whipped around and tried to bite me, so I had to grab the back of her head, her long thick hair in a fistful. That way her face stayed forward and I could lead her out of the kitchen, past potential hazards and to her safe place, the couch. It's an awful way to treat a human being, but we could get severely hurt if I am not strong and firm while getting her safe. In those moments, I have no choice, I must use all I have to keep us all safe. Sometimes Child Protective Services goes through my head, Mark and I have been in situations where our care has been questioned. Our doctors would and have backed us, but still, it feels wrong to have to grab my 16 year old daughter like that. After all I'm an ex daycare provider/nanny and one on one special education aid. I've been trained to always keep an eye out for signs of abuse in children and I've been a mandated reporter. The difference with my situation is that there is NO FILTER for Teale, once her rages kick in, getting her to safety, even if it is forcefully, is the most compassionate way to help her. So, that day, I got her to the couch, strangely, once there, she goes after me, much less. She will bite herself, scream and rock back and forth on the couch, but generally, she will stay there. She will try to grab whatever she can to throw at me, so we try to always keep the area sparse. That day she went for a photo book, I was picturing it flying at my face or her tearing the pages, so I went in to get it away from her. As soon as I did, I was the target, my face was gouged, almost getting my eye and I narrowly avoided a bite into my arm. After pushing her face away and getting out of her grasp, (which left all five finger print bruises on my arm) she managed one last good slap on my chest area, her whole hand print showing immediately. The next week I would be getting a mammogram and I knew the bruises and gauge on my face would raise a red flag. I've had the questions before, "Are you safe at home? Do you need help?" Awkward, to say the least, I've wanted to answer with a "No, I'm not safe!" because the truth is, I am not always safe, but they mean my sweet husband, so I explain Teale. Anyway, all of this goes through my head as I pull away and listen to her screaming. "Stop looking at me!" She screams repetitive phrases over and over. "I want my iPad back!" "You hurt me!" Many phrases are tried and true, she repeats the same ones in rages. Her arm is bloody and raw from her biting it badly. She starts another diversional tactic/phrase, "I need ice!" I answer with "Yes, after you are calm." I can't leave the area, she will destroy if I do. Teale has broken many things over the years, much I truly care about is tucked away, someplace safe. Then the "I'm DONE!" usually starts... My heart rate feels like it is increasing just writing this, PTSD from way too many rages. Fear kicks in, but I'm strong and I've done this many times, so I stay alert and near her, trying not to engage with her until the calm sets back in. Often, I just pray, because "if God leads you to it, He'll lead you through it," but sometimes I hate God for what Teale lives. I waffle though, there are other times I believe everything has a reason and I can see the good Teale has brought me. As I stood there waiting for her to calm, I could feel the sting of the gauge on my face, it was n a tender area, right under my eye, the warmth of blood dripping and seeing the look on Teale's face, the realization she had hurt me was in her eyes. She knows it's wrong, to some extent, but in those fight or flight moments, she has no control over herself. That may be the biggest statement I say to myself, as I watch her suffering, it's not her, it's not her fault. I'm pretty darn calm, most of the time, I've snapped, but the few times I've reacted, ie,  to being bit & slapped her to release me and/or out of the shock of the pain, I have felt like I was two inches tall. She's brain damaged, I'm not and should be able to keep my decency. So, I mostly I rely heavily on God. I'll also text Mark or a friend for strength and sometimes I'll post on FB, hoping prayers will lift her & me through the crisis. At some point in the middle of this rage, Mark finally heard the screaming and came to check on me. Beau had heard Teale through the open windows above the noise of the mower and the weed whacker. It always sounds like we are killing Teale, even if we are not laying a finger on her, to say she has a loud voice is an extreme understatement. The windows being open is often a huge embarrassment, you wonder who hears her screaming, you wonder if the cops will show up? So as Mark stepped in, covered in grass, sweat and dirt. I looked at him and he saw the blood under my eye and the bruises starting to show. I told him to just go back to finishing what he wanted too, because at that point, she was calm enough. Also, I try to maintain strength in front of Teale, I can't have her thinking that I can't handle this without Mark. I need her to know I will see her through these battles and I will love her still... So the calm finally set in, there is a change in demeanor that tells me we are safe again. We then pick up the pieces and move on. This is life with Teale.