Ten years, Shell...
Hard to believe I made it this far. Hard to believe that it has been 10 years since I last saw you, Shell. Hard to believe that it feels like yesterday I uttered good night to you not knowing I never would see you again. Hard to believe our baby girl, Neva Shell, is 9 and going on strong. Hard to believe I survived all those years holding on to what saved me - love, hope, and faith that life gets better. And it has and will continue to.
What is not hard to believe is the outpouring love and support from family and friends that kept me afloat. I have experienced a great loss and suffering and those that have been with me from the start of that life-long journey hopefully know how grateful I am and I know Shell is grateful too.
I know Shell is still with us in spirit and he is with his family as well. 10 years seems like a long time but the pain does not keep time. As the time nears on October 13th, it feels automatic that my eyes are already filled with tears and my heart is full of pain again. I don't know why but our 10th year is more painful and poignant. It is symbolic of time itself and the moments I have endured since the passing to now have been quite a journey. I feel that huge lump in my throat and heavy tugging in my heart now - all so familiar to me, especially on this anniversary.
I always miss you, Shell but it is the time of the year that I miss you the most. I wish you were here to share life's joy and pain of raising our beautiful girl, Neva Shell together. All those milestones that I was forced to celebrate by myself - I know you were there and continue to be with Neva by her side. It is just not in the flesh that hurts the most. Your intelligence, out of the world sense of humor, love of people, music, sports, life, and trivia games - I miss wholeheartedly.
I am not perfect and I am sure that you have watched over me and cringed at some stupid things I have done or made decisions that you would not have done so but I have done it with love. I know you know that. I have moved on but you will always remain etched in my heart, Shell.
Every time I see a cardinal bird fly by, I know you are flying by saying "hello, I'm still here!"
You were one of a kind.
Sunday, October 12, 2014
Wednesday, July 30, 2014
ADD-H
Neva was born with Attention Deficient Disorder - Hyperactivity (ADD-H) and it has been quite a journey for us, especially Neva. As she gets older, Neva is starting to notice nuances about herself that she does not see with her peers. This is painful as a mother to watch Neva go through bouts of tears and frustrations when she makes "mistakes" as she calls it and experiences ridicule and rejection more than others without this disorder. My heart pains for her and the mommy bear inside me roars each time Neva feels the slight of others' lack of understanding, especially knowledge of the disorder.
While dealing with the loss of Neva's father and my love, Neva was a very quiet baby growing inside my tummy and she rarely moved except after 11pm every night without question. She was also a wonderful baby, a mother's "dream" when she came out to the world. Neva slept fully through the night after only a month old and she made all the milestones faster than an average baby would fare. She even started walking at 9 1/2 months with some help. Neva wasn't a "terrible two"; however, she was a terrible three. She was an independent toddler and she decided one day she would stop wearing diapers without even having to toilet train her (that was nice, of course). However, with such autonomy comes with a price especially so young. She was ready to take the bull by its horns. Being a college student at the time and raising Neva alone, I remember many sleepless nights where Neva would be really alert and it was hard putting her to sleep. She was such an energizer bunny and I thought it was normal yet I would cry and scream to myself because I had no help or idea of how to better the situation. Looking back, I would not have survived my years at Gallaudet if not for Margie or Sara. They remain close in our lives and our hearts today.
Come two years later, Neva was enrolled at the Delaware School for the Deaf as a kindergartner. As a mom who has lived with Neva for five years, I have grown accustomed to Neva's quirks as well as her personality and tendencies. As the first year went by, there were a couple of concerns about Neva's impulsivity but as a professional myself, we agreed it was too early to determine anything. However, into her second year with the same teacher, Ms. Bower was able to, along with an experienced long-term sub and several other professionals determine patterns associated with the disorder.
Even though I was trained as a social worker at the masters level, as a mom, it was an absolutely heart-wrenching experience for me. The reason for the devastation was because of the struggles I knew Neva would face in the world. There was a wonderful psychologist there that was an esteemed co-worker I really took comfort to helped me throughout the process. It is hard to explain even in writing of how I struggled to "accept" that Neva has this "disorder". She recommended an official evaluation and we finally went to see a doctor in December on our way home for Christmas to Wisconsin. That was the beginning of my journey as a mother of a child with ADD-H. The Disorder.
It was confirmed by the doctor that Neva indeed has ADD-H and recommended that she take medication for the "disorder". It took me months to accept and agree to medicate although I know there are many views on how to treat. The decision to medicate was a personal decision for me and the two main reasons for deciding to medicate were to allow her to function and learn in school while at a very young age and for safety reasons. I am all familiar with working with students with ADD-H and making sure that medication and counseling go hand in hand to ensure tools and strategies are developed in place. I am a behavioral support specialist so I do know and understand what is required for Neva to function like others.
Neva is one of a kind. All kids are with this special gift. Rather than looking at this medically, there are a lot of characteristics in Neva to celebrate.
Neva is passionate, creative, an "out of box" thinker, always willing to help others, full of questions, confident, adventurous, emphatic, unconventional, athletic, smart, fearless, problem-solver, to name a few. This may be in a lot of children which I surely hope for. However, with ADD-H, those qualities are to be cherished because every moment in Neva's life is fleeting. Living with ADHD means Neva lives and sees life as a moving screen. She thinks and moves at the rate of 50mph as opposed to those who don't have the gift.
So to me, Neva is not broken. She is unique. She is lucky. She does not fit in the norms nor mold of society, so what. She is unique so she is capable of standing out and make differences. She is N.E.V.A.
Neva and I had a conflict tonight which led her in tears of not being capable of avoiding making "mistakes". I acknowledged the impulsivity yet I asked her, "Why are you upset?" She said her ADD-H caused her to make mistakes which in turn caused some words being said among friends. "Why do I have ADD-H!!!" She cried. My heart broke. Naturally, we talked and her spirit was restored. I am her fortress and her shield...for now. Hopefully, with community and school's support, we all can help eventually.
After transferring to Maryland School for the Deaf, Neva is going into her third year now as a 4th grader. Neva has a lot of tools she built for herself with the guidance of staff, teachers and myself as a parent as well as other families who are understanding and compassionate. It is without question that I wear my heart on my sleeve for my lil' girl and I get overly sensitive when Neva is mistreated or especially when she is being bullied. Oftentimes I have to remind myself that kids and their parents are not educated in this kind of gift that Neva has. If they are open, I will gladly guide them and allow discussions to develop healthy relationships. At the same time, I have to remind myself that I need to allow Neva room for errors that she can solve for herself. This is a challenge for me. I hope other parents can recognize my struggles and support me in this effort.
Together, we stand; divided we fall.
While dealing with the loss of Neva's father and my love, Neva was a very quiet baby growing inside my tummy and she rarely moved except after 11pm every night without question. She was also a wonderful baby, a mother's "dream" when she came out to the world. Neva slept fully through the night after only a month old and she made all the milestones faster than an average baby would fare. She even started walking at 9 1/2 months with some help. Neva wasn't a "terrible two"; however, she was a terrible three. She was an independent toddler and she decided one day she would stop wearing diapers without even having to toilet train her (that was nice, of course). However, with such autonomy comes with a price especially so young. She was ready to take the bull by its horns. Being a college student at the time and raising Neva alone, I remember many sleepless nights where Neva would be really alert and it was hard putting her to sleep. She was such an energizer bunny and I thought it was normal yet I would cry and scream to myself because I had no help or idea of how to better the situation. Looking back, I would not have survived my years at Gallaudet if not for Margie or Sara. They remain close in our lives and our hearts today.
Come two years later, Neva was enrolled at the Delaware School for the Deaf as a kindergartner. As a mom who has lived with Neva for five years, I have grown accustomed to Neva's quirks as well as her personality and tendencies. As the first year went by, there were a couple of concerns about Neva's impulsivity but as a professional myself, we agreed it was too early to determine anything. However, into her second year with the same teacher, Ms. Bower was able to, along with an experienced long-term sub and several other professionals determine patterns associated with the disorder.
Even though I was trained as a social worker at the masters level, as a mom, it was an absolutely heart-wrenching experience for me. The reason for the devastation was because of the struggles I knew Neva would face in the world. There was a wonderful psychologist there that was an esteemed co-worker I really took comfort to helped me throughout the process. It is hard to explain even in writing of how I struggled to "accept" that Neva has this "disorder". She recommended an official evaluation and we finally went to see a doctor in December on our way home for Christmas to Wisconsin. That was the beginning of my journey as a mother of a child with ADD-H. The Disorder.
It was confirmed by the doctor that Neva indeed has ADD-H and recommended that she take medication for the "disorder". It took me months to accept and agree to medicate although I know there are many views on how to treat. The decision to medicate was a personal decision for me and the two main reasons for deciding to medicate were to allow her to function and learn in school while at a very young age and for safety reasons. I am all familiar with working with students with ADD-H and making sure that medication and counseling go hand in hand to ensure tools and strategies are developed in place. I am a behavioral support specialist so I do know and understand what is required for Neva to function like others.
Neva is one of a kind. All kids are with this special gift. Rather than looking at this medically, there are a lot of characteristics in Neva to celebrate.
Neva is passionate, creative, an "out of box" thinker, always willing to help others, full of questions, confident, adventurous, emphatic, unconventional, athletic, smart, fearless, problem-solver, to name a few. This may be in a lot of children which I surely hope for. However, with ADD-H, those qualities are to be cherished because every moment in Neva's life is fleeting. Living with ADHD means Neva lives and sees life as a moving screen. She thinks and moves at the rate of 50mph as opposed to those who don't have the gift.
So to me, Neva is not broken. She is unique. She is lucky. She does not fit in the norms nor mold of society, so what. She is unique so she is capable of standing out and make differences. She is N.E.V.A.
Neva and I had a conflict tonight which led her in tears of not being capable of avoiding making "mistakes". I acknowledged the impulsivity yet I asked her, "Why are you upset?" She said her ADD-H caused her to make mistakes which in turn caused some words being said among friends. "Why do I have ADD-H!!!" She cried. My heart broke. Naturally, we talked and her spirit was restored. I am her fortress and her shield...for now. Hopefully, with community and school's support, we all can help eventually.
After transferring to Maryland School for the Deaf, Neva is going into her third year now as a 4th grader. Neva has a lot of tools she built for herself with the guidance of staff, teachers and myself as a parent as well as other families who are understanding and compassionate. It is without question that I wear my heart on my sleeve for my lil' girl and I get overly sensitive when Neva is mistreated or especially when she is being bullied. Oftentimes I have to remind myself that kids and their parents are not educated in this kind of gift that Neva has. If they are open, I will gladly guide them and allow discussions to develop healthy relationships. At the same time, I have to remind myself that I need to allow Neva room for errors that she can solve for herself. This is a challenge for me. I hope other parents can recognize my struggles and support me in this effort.
Together, we stand; divided we fall.
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