Lexi winning the silver medal in Special Olympics Golf
Last year at this time I was still unpacking boxes from our recent move back to our favorite town. How grateful we were to find an academic program that suited my son and returned us to small town mountain life. Little did we know at the time that we were headed into one of our biggest descents as a family. As Winter progressed, so did my son's mental illness giving rise to many calls for help as Spring approached to all of his service providers. Things were getting way beyond my ability to manage . By Mother's Day my son went in for his first psychiatric hospitalization only to have five more from then to Thanksgiving. The mental health system moves VERY slow and it took so long to see the psychiatrist and begin true assessments for a diagnosis. In the meantime, symptoms continued to worsen and new ones popped in to play. I would say that the very hardest part of the whole summer was the lack of understanding and shock.
As the diagnosis became clarified and medication was tweaked and tried and tweaked some more the shock wore off and the reality and grief process kicked in. At one point my daughter burst in to tears alone with me and said she was afraid to leave the house ever day because she was never sure what she would come home to and if her brother would still be alive. Every morning when I went to wake up my son my stomach would tighten as I would pray that the bipolar did not win and allow him a successful suicide attempt while I slept. I can write this out but nobody could ever really know the sick feeling in the gut that is constantly at play with an unstable child who is determined to kill himself unless you have lived it first hand. His thoughts were twisted and dark and the damage done by the psychotic breaks is significant and somewhat permanent. In a way, not only will my son never be the same but neither will my daughter or I.
Lexi's scars-he wouldn't allow stitches-some of these bled for five days
As we have had a month and a half of stability (mostly) my son said it feels like so long ago that he was in so much pain and he is so glad to leave it behind in 2013. My family has started to step, cautiously out of survival mode and in to a more healing place, looking to heal, rebuild, strengthen again. I have enough information to know that stability is VERY fragile and with a bipolar autistic kid everything can change in a minute or less but I have also been taught to change my expectations and responses.
I leave behind in 2013 my hopes and expectations of my son as I used to know him and I treasure him as he is now, alive!, finding joy in music, painting, golf and his own personal brand of humor. My daughter feels safe enough to be irritated by him again and we are working on getting her ADD back under control. I have begun to sleep a minimum of 5-6 hours a night and although I still have a tight stomach every morning I wake up until I hear him answer my calls, I am digesting food better and getting sick a lot less. We are trying to focus on our health and physical well being more as a family, engaging in different sports and activities, initially to counter the side effects of Lexi's medication, but also to help with brain clarity, mental balance, stress reduction and my visual impairment.
I have had many friends and family express concern for my daughter and I which is not easy to answer. Yes, this has been hard on us all. I am a single full time parent and a working Mom who is a part time law student and I have a degenerative visual impairment called Stargardt's which is made worse by stress. It is truly one dimensional to consider that signing over my parental rights to the state and putting my son in a home would be better for my daughter and I. I do not judge those who have had the strength to do this but I am not in that place and I hope to GOD I never will be. I have researched my options and understand as many perspectives as I can possibly see from where I stand. That is my son, my child, my daughter's brother and I believe he is mine in all of his disorders and mental illness and unique challenges for a reason.
I was reminded today that God does not ask us to have a mountain of faith but merely hold on to a mustard seed of faith...that small...and it will help get us through. I have white knuckled my mustard seed and for that I am grateful that today is a good day. I make no declarations of "I will never" or "I will always" because I have been humbled hard and think declarations are dangerous. Taking care of my daughter and I, for now, is keeping my family together...our threesome. We may lack grace at times but we NEVER lack love.
My family...traveling our journey!
I am not sure what 2014 will bring us and I have learned that making plans is a set up for disappointment so I will merely have loose hopes and goals and many prayers. I told my son that if there is one thing I know that we can leave behind in 2013 is the shock. We can be grateful for the medications and research being done on autism and mental illness and we can now walk with more understanding of what is happening and continue to look for different approaches on how to manage it all. All three of us need to manage our family, my son in his mental illness, my daughter in her focus and anxieties and I in my grace, stability and strength. I am grateful that through the vast amounts of sleepless nights, excruciatingly stressful months and the grief and pain that God has kept me strong and relatively healthy. My eyes have not degenerated too much, my attitude can rebound and there has been no physical collapse. (knock wood) !!!!
Is 2013 a bad luck year? I could see it from that perspective or I could see it as a year I was humbled and stripped down to find the truth in life, the mustard seed to hold on to, the grace in taking life one breath at a time. Thank you 2013 for those lessons and I am so grateful to move pst them into more ease and joy. May 2014 bring more smiles then tears and more digestion then sickness, more stability then shock and more hope then fear. I begin towards the end of my law school career, beginning my fourth and final year in May and the acceleration toward the Bar Exam in 2015. I have the privilege of being on Law Review and exploring the perspective of a "legal scholar". I am blessed to watch my children grow and meet the challenges of adolescence one with ADD and the other now understood to have Autistic Spectrum Disorder AND Bipolar. I look forward to reaching our fundraising goals and receiving our autism service dog in the early summer months of this coming year and all the benefits related to that blessing. I am grateful to be honest and open in sharing my journey so that perhaps the shock and grief I have felt along the way could comfort or enlighten another to branch into acceptance. Thank you 2013 and welcome 2014...let's see what you got!
An autism service dog trained by Pawsitive Service Dog Solutions
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