Monday, November 23, 2009
It is time to write about Linea! She was born on Thanksgiving Day, finally, after making us wait through three days of snowstorms, walking miles through the hospital corridors and waiting, and waiting some more for her entrance into the world. In a family of blonde babies, she was a head of dark hair and born ready to dance with long, long legs and music in her soul and on her lips. Her seven and 1/2 year old big sister, Jordan, held Linea moments after her birth and declared her partnershp in mothering this baby. Linea became a headstrong two-year old and one that we suspected might cause us to fear the teen-age years. Not so. Yes, she was determined and strongly goal-oriented, but immensely kind and loving to her family and to the world. She was a thinker, putting pieces together like a game of Uno, like a Brahms concerto, like the workings of the brain. She is still all this and more. Just look at this beautiful picture she sent to me while attending college in Chicago. This girl has taken us all on a journey with her, an unexpected journey, yet one of immense bravery and with such honesty that our lives have been enriched beyond anything we could have possibly considered. Read her blog, http://www.lineajohnson.blogspot.com/ and celebrate another year with our precious daughter. I can't wait to travel forward with you, Linea, and share all that life has to offer! Love, Mom
Sunday, November 22, 2009
I want my binky. I want TWO binkies. I want all my binkies and I want them right now. Give 'em to me!! We have all been there. Too many things going on in our lives and not enough of them on the positive side. Too much anxiety, too many bills to pay, too many sick kids or too much homework. We need some comfort. The vast majority of us can and do provide comfort to everyone else in our lives. We often provide more than is asked of us and sometimes comfort that is not necessary or even wanted. Why can't we do that for ourselves? Eighteen-month old babies know how to get what they need. As well we mostly provide for them and try to comfort them the best that we can. Why not ourselves? I am going to yoga this week and more than once. I am opening the expensive wine and enjoying a glassful by the fire with the dear Husband. I am getting up from my darn-hard writing project at least every 40 minutes and walking outside, even if it is pouring. I look forward to spending 3 days with family over the holiday, not thinking about or doing anything that is work-related. You, too, find your binkies! A blessed and peaceful week to you!
Sunday, November 15, 2009
I would say that overall my posts are fairly upbeat and my thoughts as well. This is not the case today. Be prepared for a sad tale.... but there is a message within this tragedy. Have you ever imagined that your child could be hospitalized and that you would not have have input into her care? If your "child" is 18 years old this may very well be the case. There are so many things that can go wrong when someone is hospitalized and it seems much more likely in the mental health arena. I have written in previous posts about my friend whose daughter is currently hospitalized for a severe mental health condition. She is in "no-(wo)man's land". She is not yet out of her teens but considered an "adult" in the legal world. She is too ill to give consent for her care, and now is spending her time in a horrifying limbo of health care hell. She has been in three facilities and is now at a state mental hospital. She is too ill to give consent for the initial recommended treatment and her parents are prohibited to do so since she is no longer 17 or younger.
How did this happen? This high school girl was struggling with a tentatively diagnosed illness but suddenly things took a turn for the worse as she spiraled into a psychosis and was hospitalized. She was unable to sign the paperwork allowing her parents into the system of her care. She was assigned a guardian ad litem. Doctors could not share information with her parents without breaking the HIPAA laws. The parents are seeking guardianship but this is taking too much time. The parents (a teacher and medical doctor) are seeking custody of their daughter; custody so they can speak with the doctors, make decisions and move thngs along as we would with any health condition. Meanwhile they wait in agony.
Their daughter's mind betrays her. She is lost and unable to find her way back to any semblance of normalcy. Her parents weep. No one knew that this insidious illness was coming as quickly as it did. It moved too fast to complete all the legal requirements necessary for the parents to make decisions for their daughter's care. It moved to fast for them to recognize that they needed to have an advanced directive in place. If these two highly educated parents cannot make things happen, what about parents that are unaware of this possibility? Laws were passed back in 1967 by then California Governor Ronald Regan, setting a national precedent of required judicial hearings for extended involuntary commitment and the prohibition of forced medication, among other mandates. I get this. We have moved greatly and thankfully from forced commitment and treatment but where-oh-where is common sense humanity?
There is no answer today for this horrible situation. The parents are struggling to keep themselves from falling apart while doing what they must to support their child. I urge parents to consider having an advance directive for health care in place by the time a child turns 18. The consequences can be devasting for everyone involved if this is not in place. Yes, it may be unlikely that your child will have a major psychotic break at the end of their teenage years but this time period is when these insidious mental health illnesses show up and sometimes quickly. As well, consider this for every member of your family. Linea and I heard Kay Redfield Jamison recently speaking about her new book, Nothing was the Same, and author of, The Unquiet Mind. She is a professor in the psychiatric department and co-director of the mood clinic at John Hopkins and a leader in the research and treatment of mental health conditions. She has bipolar disorder and spoke of her own advance directive for care. As part of my professional responsibility I will include this information in my classes and assure that our future school psychologists, school counselors and teachers are aware that student become independent from their parents at age 18.
I spoke with my friend this morning and she not only again gave me permission but wanted me to share her story. She is not ashamed. She is a terrified mother. Take care, good friend. Let us all send prayers and good wishes to her family. My heart breaks for her and her family.
(Solemn and Triumphant, Painting by Jordan Swain )
Friday, November 13, 2009
It is time to write about sister Jordan! I wanted to give the "Dad-post" the spotlight for a few days before bumping him down for the "Sister-post". While waiting to post this over the last few days I noted that a number of blogs were posing the question of the impact on siblings of kids with disabilities. I guess we were all thinking along the same line. Hopefully Jordan will comment on this and let us know what SHE thinks about Mom's comments! She is invited to guest blog!
Jordan is Linea's big sister, seven years, five months and thirteen days older than her and about five inches shorter. Jordan has always been a big sister to Linea as well as practicing her mothering skills on her from the time Linea was born. Jordan led Linea through her childhood with care and love and her own unique brand of imagination. Which, as a budding artist, was considerable (check out her art at http://www.jordanswain.com/). Jordan was the chief instigator and designer of the Phantom of the Opera birthday party when Linea turned nine. The party was complete with a Phantom cake that Jordan made, decorations, music and all the materials (under Jordan's directorship) for each child to make a Phantom mask. The girls have a remarkably loving relationship. Linea loved her sister so much that she and her best friend, Kim, interviewed one of Jordan's first dates. In trench coats and writing on their clipboards, the two girls quizzed the poor kid on everything from his favorite food, football team, and pets to when and how he would bring Jordan home. Jordan and Linea hardly ever had arguments or competitions or any hints of jealousy between them. The only time there was any real friction was when Jordan was in the last months of her high school days and preparing to go off to college. Linea wanted to go with Jordan everywhere she went. She knew Jordan's time at home was short. Jordan was trying her hardest to prepare to fly away from the nest and Linea was trying her hardest to keep her home.
They have remained incredibly close and as a mom it is so heartwarming to see that they are best friends and will be there for each other no matter what. So how did Jordan react to Linea's illness? These two girls have very different temperaments as anyone who knows both of them can attest (understatement?). Jordan said at one point in the beginning of all of this, "I don't understand why Linea is so sad. I just get mad!" When Linea was finally hospitalized Jordan was there, continuing to fight for her sister. I had to remove Jordan from the psych unit when she wanted to take on the nurse that wouldn't let Linea leave for a walk outside. She finally left with me pulling her arm, but proclaiming that the "nurse was a b*%$h." Once out through the locked doors and into the hallway of the hospital Jordan burst into tears because she was so afraid for her baby sister. Jordan is a tough, beautiful and feisty woman but barely below the surface she is incredibly sensitive and vulnerable (just don't tell her that!). One of her strongest traits is loyalty. I can think of nothing that would fray her loyalty to her sister. Jordan's love for her sister is kinda like a mom's. I don't see any jealousy or resentment of any of the support or care that Linea receives as she works her way through her diagnosis and treatment. I only see great protectiveness and love. Jordan never shies away from the diagnosis, the treatment or the acceptance of her sister. She also has so much optimism and belief in her future that even in dark times she buoys us all up and forward. Jordan, you are our hero.
Sunday, November 8, 2009
Those of you that have read my blog or heard Linea and I speak around the country about our experiences with her bipolar disorder may wonder how her Dad is doing with all of this. A lot of dads fix things. Linea's dad wanted desperately to fix anything that was wrong with his daughter. He was always the one that raced to the airport and flew across the country when she was her sickest. He was the one that brought her home from college when she crashed into a life-threatening depression. He was the one that flew back and packed up her life and brought it home again. He was the one that told me, over and over again and even when he might have been unsure himself, "It will be okay." Linea wrote in her journal after a particularly hard time that she remembered when her Dad had glued her broken Tinkerbelle figurine back together and she said, "I need him to repair me. I am broken." He tried so hard to fix everything and when life was finally a little more stable he wondered why we would want to talk about the not-so-stable times all over again. But he continues to support us and he is proud of the strength of his daughter. She is putting herself back together again. Meanwhile he is out in a Seattle down-pour trying to keep the gutters open and the flood from coming in the back door. Staying on guard, fixing our lives. Thanks, honey!
Wednesday, November 4, 2009
The innocence and wonder of a new-born simply takes one's breath away. We hold our new babies and wish and pray for a life-time of health and happiness for these wee and fragile beings. Keep the pain and hurt away! Yet, we can't. The first ear-splitting hysterical cries of hunger remind us of the impact of this tiny life on our own. Soon there are cries of irritation, two-year old tantrums, pouts, and eventually maddening teen-age silence and unpredictable moods. Mixed in are larger than equal parts of joy and crazy-funny-silliness and almost more love than a parent's heart can hold. While life is never easy there are some children that just have more than their share of struggles and their families along with them. I have been privy to tales of sorrow for many years from my position as an educator. While sharing our own writing and experiences across the country, my daughter and I have heard heart-breaking stories of children and families struggling with mental health conditions as well as all other disabilities. There is no magic to ease the heart. Given that this blog is an "inside meandering" of my thoughts I guess that is what I am doing this early morning. No answers to all the pain we share with our children. But is there exceptional joy when you experience those times when things are finally or momentarily better? When a child is happy? Is there less living on auto-pilot when you known this pain and then you are granted times of grace? Just a thought.....
(photo by Jordan, beautiful grandson)
(photo by Jordan, beautiful grandson)
Sunday, November 1, 2009
I have been in Savannah, Georgia. presenting with daughter Linea. We were at a conference with a theme of preparing students with disabilities for life after high school. Linea and I presented on bipolar disorder and information and thoughts on supporting young people with mental health disorders. I have friends all over the country and many of them were at this conference. Linea was completely amazing and touched everyone in the audience. I am never worried about her when we speak at events but it felt a little different having friends in the audience. Particularly friends that had been with me through the times that she was so sick. It really hit me how far we have come since just a few short years ago right before she was hospitalized and we were all together in Portland, Oregon. Now she is with them in a professional capacity as well as developing personal friendships. Life has many twists and turns. Jane and Deanne and Karen and many more friends from all over the country supported me and Linea through some very tough times. It was extra special to spend time with them and Linea just having fun together and learning from each other. I am so grateful to have such great friends...and for a daughter that is able to offer so much to others. Thank you! And, P.S. I am writing this from an airplane somewhere over Tennesee as we wing our way back to Seattle!