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Friday, December 12, 2014

Blood Draws

Our daughter Teale is very tolerant of blood draws to check her medication levels. This has not always been true though. There was a time it took the brute strength of a few or many, to get a blood draw done. We tell Teale the story of the time she chucked her "no spill bubble container" at the phlebotomist. Her aim was perfect, she hit him square in the middle of his forehead. Luckily he didn't need stitches, but it did cause a good gash. He had been the one phlebotomist we had found who was willing to work with Teale. He was patient, caring and wanted to help her to not be so scared. He showed her so much caring, that we only went to him for years, until the day he told us he was moving to Florida. By then he had helped Teale to not be scared of a blood draw and we knew we would be ok, even without him. He forgave Teale immediately after she threw the bubble container at him and even followed threw on getting her blood draw done that day. Mike was a special guy in the life of my family. I often wonder where he is today and whether he knows how much he helped us? I wonder if he has a scar from the gash Teale caused and if he thinks of her? How proud he would be if he saw her today. She sits through endless waiting on Saturday mornings to get a blood draw done, never even flinching. She needs them fairly often, depending upon how she is doing. If we are having difficult behavior issues from her, we often first check medication levels. Medication levels can give us information that Teale often can not provide. Her seizure and bi-polar medications have very small windows of therapeutic benefit. If they get slightly high or slightly low, they can cause her great distress. Teale is also on thyroid replacement medications, as she has Hoshimoto's Disease. Keeping her thyroid balanced is often very tricky. A lot of people have thyroid issues, many would probably say it's not a big deal, you just take a replacement. Personally, even I would say that about my Graves Disease. I've been on the same dose of thyroid replacement for many years. My body seems to have adjusted fine, but I'm not Teale. Organic brain injury, her other medications, everything messes with how she reacts to medications and to how they are metabolized in her. A "typical" person would not necessarily need the huge amount of Lithium she takes. The balancing act of her medications from several different specialists is very tricky. Interactions have been missed, problems have occurred. Just last week we discovered some of her medications are off kilter and we are tweaking. Hopefully this is the cause of her unrest. We are hopeful we can get them straightened out, but it is trial and error and blood draws to check and then more trial and error... 

Wednesday, December 10, 2014

Forgiveness is giving up the Hope...


As I reflect on the last 16 years of my life, this quote has been on my mind often. I came across it recently and it totally struck a nerve. The should have, would have, could have's of Teale's birth haunt both my husband and I often. Around the anniversary of her birth, I relive the memory almost constantly in my mind. I remember some things very clearly and others I think I was just told happened. It is fuzzy, what is real and what I may have imagined. I know medical malpractice was at the core of her injuries, but my belief in God and fate makes me also wonder if it could have been any different. Were Mark and I just meant to be the parents of this very special child? Are there lessons to be learned that could only be taught by living this life? I made a decision almost immediately after her birth that all I wanted was to work on gaining peace in it all. I said to Mark, I can not go through this over and over again and if we decide to sue, it will not change what has happened. We will not get back the child who was there before the brain injury occurred. I didn't want to be a victim. I knew medical malpractice is very difficult to prove and I would be ripped apart in order to try and prove it was my fault. Questions like, had I ate tuna or not taken the prenatal vitamins or I had had a glass of wine before I knew I was pregnant? The lawyers would be brutal to me and hearing the birth story through their eyes would be very painful. I was worn and just wanted to get to know my new infant. I wanted peace, for myself and for my family. We may have had a case, we may have gotten Teale compensation for the life she now lives as opposed to the one she "should" have lived....but forgiveness is giving up the hope that the past could have been any different...

Thursday, December 4, 2014


Hours after her terrifying birth with APGAR scores of 0, 0, 3, 5... The NICU nurses (2 of our team of 3, I am friends with on FB) took this pic for me before Teale was sent into surgery to put her intestine & colon back into her body. In this pic, Teale is in a medically induced coma, to help her body heal. She was kept in this state a few days. The surgeon, who put her intestine & colon back in & closed her up, was Dr Bob Emmen's. His daughter Kim, was a good friend in HS and beyond. Dr Scibetta was our on call, delivery room dr & his daughter, Karen, was a friend in HS & still is a friend of ours. Karen took wedding pics for us in both 1989 & at our ROV.
Next Tuesday, 12/9, this very sick infant, with a very uncertain future, turns 16 years old. I know she has no idea how much she is loved and how many people her life has touched. I'm sure it is far more than Mark & I will ever know. Thank you for all the support & love & prayers on this journey. We seriously could not & can not do it alone. It takes a village, Mark & I are Blessed!

Tuesday, December 2, 2014

Sixteen

On 12/9/14 Teale turns sixteen years old. Turning sixteen conjures up memories for most I'm sure. You might remember a Sweet 16 party and or getting your learners permit or even your drivers license. It is a big milestone year for most. Independence is gained and you no longer have to count on your parents for all your transportation needs. It is the year parents worry and kids blossom into young adults. Many seek their first "real" jobs outside the babysitting and lawn cutting money makers of youth. I believe it is a year kids and parents butt heads often, curfews get broken, limits get tested. It's a year of proving you are to be trusted or possibly a year of much argument. Parents try to let go and kids try to fly. Sixteen is a big year for most kids and for most parents. For me, Teale turning 16 just makes me feel alone, in a sadness I have felt on other milestone years. It is a year I feel different from many other Mothers. I am the Mother of a daughter who is chronologically 16, but mentally much younger. Oh, I know there are others out there who understand this pain. I've watched several friends feel similar loss when their "special" child turned 16. So I do realize I am not really alone in this feeling. But all people are unique and therefore so are our feelings. Even the one person who could have the most similar feelings, my partner in this crazy life, Mark, has his own unique thoughts as sixteen approaches for his middle daughter. I won't even try to voice the differences between us, because honestly, I've avoided the discussion. My fear of a floodgate of emotions pouring out of me has kept me from any deep conversation. I know he is hurting too, but I can really only speak for myself when I share the loss I feel. It is like life is passing Teale by in some ways. I often think about all those kids who she was raised with in the public elementary school. They are in tenth grade this year, probably most of them have some idea of what they want out of life. They may be thinking about colleges and lifelong careers. Many have had dating experiences and crushes. Some are already driving and working. Their lives might be filled with sports, instruments, clubs and or social connections. Teale misses out on many of those typical experiences and no matter how much Mark and I try to fill up her life, it will never be typical. Most likely Mark and I will always be her biggest supporters and her best friends. I occasionally allow myself to wallow in my sadness. Today that sadness has overtaken much of my thoughts. The tears started to flow at one point and I realized I was missing my Mom in all this. Somehow I knew she would understand my sadness as Teale turns sixteen. She wasn't a perfect Mom by any means, but she really shined as an understanding, unconditionally loving Grandmother with Teale. I remember her heartbreak when Mark and I decided we had to hospitalize Teale as a young child, for what turned out to be a manic episode of a new diagnosis at the time, bi-polar. That day was one of the lowest ever and my Mom came to my home to offer support. It was in that moment that I finally felt true forgiveness toward her. There was "stuff" I had held onto, anger I had not let go of. But that day, in our messy garage, as Mark left to go pick up Teale from her elementary school and I broke down sobbing, I started to understand my Mom better. My rock, Mark wasn't there to support my sadness, he had the awful task of admitting our young daughter into a pediatric mental hospital. I was a disaster and in my horrible pain. I saw my kid's Grandmother, my Mother, who was hurting deeply too. I remember her wishing out loud that she could make it all better, but it wasn't the words I heard, it was the sincerity I felt. It hit me hard, my Mom was the one other person besides Mark and I, who truly understood the anguish that we felt. It was a pivotal moment for me, a moment I will never forget. I finally let all that "pent up stuff" against my Mom go. I finally saw her as a person, a person who wasn't perfect and I realized I had tried to hold my expectations of her too high. Mom left us almost eight years ago and the thing I still miss the most is her not knowing my kids as they grow. What I regret is that it took me so long to just love her as is...faults and all. I wish you were here Mom to wish Teale a Happy 16th Birthday, I know you would be proud...

Thanksgiving Weekend



For those who are not on FaceBook with me, this was a recent status that explains a bit of what the Thanksgiving weekend was like. We were still "just" thinking it was her mental illness causing the unrest, but now we are questioning seizure activity. Hopefully we will have an answer to our concerns soon... 




On Thursday there was not a laugh or even a slight smile from her all day. Teale literally just growled, yelled & was horribly mean to us the entire day. Her soul seemed completely unsettled and very angry. Yesterday was still quite unpredictable & unsettled at times, but she smiled & laughed some, which made the day 100% better. I truly needed to see that joy, even just a little, to renew my faith. Cycles are common with Teale. She goes through weeks of tough, hopefully followed by weeks of happy & calm. The last few weeks have been unpredictable, rages have been more often again, intensity of moods has been high, but Thursday was by far the worst day in a very long time. It broke both Mark & my heart, not for ourselves but for Beau & Gwenn, who will forever remember Thanksgiving 2014 as a very sad day. Our family has no choice but to plug through those days when Teale's moods control us all. Having those days happen on holidays is more common than not. I have often wished for crisis help on days her mental illness is uncontrollable. A place she could go, so we could take a break & renew our souls to continue caring for her. I have wished for magic pills & therapy that cures. On Thursday I wondered much about medical marijuana & if it would have helped Teale to feel more at ease in her very obviously tortured self. I'm often frustrated by not being able to help my daughter enough. There is no greater pain for a parent than to watch your child suffer & to have no ability to help them. How I hope that someday mental illness is not treated as a "closet problem." I pray those who suffer like my Teale someday have the same support and love that a person with another disease gets. The shame associated with mental illness is unproductive & useless to the many people who suffer in silence. It is not Teale's fault she has this challenge. I am not ashamed to discuss it openly b/c I am proud of how much she has taught & improved over the years. Our experience has been able to help countless others who reach out to us for support & advice. Sharing the journey encourages others to seek help, knowing not everyday has to be like "Thanksgiving." There is joy, but some days it is just buried very deep... Keep the faith & support the mentally ill. Their pain is not "just in their heads."

Not Knowing...

I'm up early, the only time I really seem to enjoy writing. A cup of coffee in hand, my mind fresh and clear from sleep the night before. The house is quiet, just the sound of my husband, he's sleeping hard and I can hear his breathing, heavy and loud, along with the hum of lights and the refrigerator. I woke and thought about going back to sleep, but I've craved writing for weeks and just haven't taken the time to do it. Another holiday passed, another Birthday coming, Teale will be sixteen next Tuesday. She has been tough and we've been struggling with "what" this is for weeks. Recently we've been seeing staring spells, where she won't come back to us easily and we are now questioning if this is new seizures. The weekend was especially difficult with her moods controlling us all. Five days off from school is a recipe for disaster in itself with Teale, but something is different. Mark and I are trained well by Teale and her doctors to be constantly observing her. We watch for changes in her moods and in her physical abilities, knowing we are her only advocates and if something changes, she needs us to help her. Even our son, who is in college, but living home, has seen the staring spells that seem to accompany the recent behavior outbursts. Seizures have been part of Teale's entire life, they started in the NICU and have haunted us on and off since. Is she experiencing a new seizure that is interrupting her brain activity and for lack of a better term, then scrambling her thoughts and making her feel confused and off? This could easily be the cause of behavior outbursts. We don't know, we just know she has not been well for weeks now. Outbursts have been more frequent again, sleep has been quite often interrupted. We've heard her up at odd hours, wandering, getting drinks and looking at her American Girl catalogues or watching her iPad. Teale's bi-polar disease can do this to her too and obviously, lack of good sleep can cause a person to be fatigued and crabby. But then again, lack of good sleep can also be the cause of seizures, it is how doctors "see" seizures in a controlled setting. We've done several seizure studies with Teale, fifteen feet of cord attached to her head and an EEG reading her brain waves. It is a necessary test for Teale to see the invisible to the naked eye issues going on inside her complicated brain. Her neurologist can't tell us much without this test, but it is not a test done quickly or easily. She's been hospitalized a few times for long term EEG monitoring, two plus weeks, attached to fifteen feet of cord in a hospital room. To say it is not fun is an understatement. One of us must be with her 24 hours a day and keeping her happy with no activity is tough. In long term monitoring, the doctors lower seizure medications and limit sleep. Denying the body REM sleep brings out seizures in a person who is Epileptic. To be able to "see" seizures on the EEG gives doctors more information as to what they are dealing with in order to treat it. In light of our observations recently I was in touch with neurology yesterday and will be seeing them today. Mark and I never know what's around the corner for Teale, will her seizures continue to be controlled or will they creep out again in new and different ways? Is this seizures or  is it something else, the mysteries of Teale are often hard to figure out. The only thing we can do is to be vigilant, observing her and making sure any signs of something going on is explored by her medical team. So I again ask for prayers; prayers that we figure out Teale's distress, prayers there is an answer to her mental pain and prayers that if there is no logical answer, this cycle passes and our happier Teale returns... 

Monday, November 10, 2014

My Miracle, part 2

The love and experiences were easy for us. We both believed in our hearts we could "heal" Teale with our love. I probably believed it more so, in almost a "nonacceptance" way. I was sure her cerebral palsy was curable. I was sure we could make miracles happen and her right hand and arm would be fine. After all, Mark and I were united in helping our daughter. We started in the hospital, learning about "Kangaroo Care." We agreed to start Teale on PT right there in the NICU. I went through many hours of pumping breast milk, even though Teale was not even allowed to eat it. Because we both believed in the healing power of breastfeeding her, once her food restrictions were lifted. We prayed and asked for prayers a lot, receiving notices of churches all over the world praying for our daughter. Those things were easy for us. Then there were the things we didn't say, the unconscious decisions that I will always believe made Teale a better person. We had music playing for her from the very begining. A tape recorder in her NICU crib, soothing her when we were not able to be there. Music would be a hugely important part of her life and in my heart I am sure it has healed much and made connections in her brain that may never would have happened in another family. Even after the day I was told "she has failed all her hearing tests, we believe she is deaf." We still played music, believing "they" were wrong. There were many things thrown at us and many we only mildly accepted, pushing the "bad" away and believing in the power of God, love and prayer. Honestly, we were totally full of ourselves, both Mark and I were so positive we could "show the doctors they were wrong," there was hardly a thought of "maybe some of this can not cured?" We even omitted the truth when speaking to people about Teale, never acknowledging her severe brain damage. Teale was going to show the world what determination, prayer, hope, faith and most of all LOVE could accomplish. It's funny how I can get back inside that "me," the new Mom of a daughter with extremely complicated medical and physical needs. I still remember how clearly I truly believed that someday, somehow, her right arm and hand would work. Her mind would be strong and there would not be developmental disabilities. Maybe some see this as sad, that I was so unaccepting of my daughter as she was, but I don't see it that way. What Mark and I did, both conscientiously and unconsciously was to believe in our ability to make her the best she could be. We believed she would walk, we believed she would talk, we believed she would learn and love and be loved. We believed our work and the work of a team of supportive therapists, teachers and doctors could create a much better person than the doctors at the NICU had told us she would be. We had faith and we were constantly lifted by the prayer and support of those who came into our life. Teale is who she is today because so many believed in her. There have been many obstacles, many times we got thrown a new diagnosis that took away a bit of our heart. There has been acceptance too, that I did not "cure" everything still haunts me in some ways. The truth is Teale wasn't meant to be "healed." Teale is a miracle, not because she lived through a traumatic birth, but because she has taught me what "life" really is. It's not the money we make or the jobs we hold or the house we live in. It is the connections we share as human beings, loving and supporting each other through the good, the bad and the very ugly. Everyday I am touched by people Teale brought into my life. I realize, without her, my friendships and my love with Mark would not be as strong. That is the miracle of Teale.