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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... 

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."