15 Months - Shalva
Fifteen months have passed. How can it be fifteen months since we've seen your face, your smile, heard your voice, your cluck, your laugh. Fifteen months since we've done your treatments, given you medicine, helped you with all of your needs. Fifteen months since our home was a revolving door for family, our village, nurses, Chai Lifeliine, Gilchrist. FIFTEEN MONTHS of us learning to live without your physical being, dealing with the roller coaster of grief, making memories without you, and learning our "new normal". A "new normal" which has been challenging, joyful, full of happiness and sadness, and lots of emotional growth. We continue to have our moments, which we will have for the rest of our life, of things happening and wanting to be able to share with Ian. Things which the four of us did together, which now the three of us do together...some feels ok, others not so much.
I recently spent 10 days in Israel with Jewish Women's Renaissance Project (JWRP) and Etz Chaim. It was an amazing, life changing experience in so many ways that I am still processing most of it. One of the experiences I had was to visit Shalva, the Israel Association for the Care and Inclusion of Persons with Disabilities is dedicated to providing transformative care for individuals with disabilities, empowering their families and promoting social inclusion. Non-denominational and free of charge. Shalva's programs provide an all-encompassing range of services for hundreds of individuals from infancy to adulthood. Additionally, Shalva supports and enables families to raise their children with disabilities within the family framework. Through nearly three decades of award-winning programs, Shalva partners with government, academic and philanthropic institutions in advocacy efforts to create a more inclusive society.
I was asked to speak about Ian, to share with the other women from Baltimore, Greater Washington and a few Israeli, who Ian was. Here is the speech:
In order to understand who Ian was, a little history needs to be given:
Brian and I met during college and after 4 years of friendship began dating in 1996. In 1997, we got engaged and in October 1998 we were married. Next came the kids, our beautiful twins, Becca and Ian born April 22, 2003, born 5 weeks early.
As little girls, we all dream about our future, getting married, having kids, the house, and the white picket fence. Immediately after the twins were born, my dreams and reality started to differ, Ian's birth was traumatic, he was not breathing on his own, he needed to be intubated, his left lung collapsed and he needed a chest tube. After 8 hours of being worked on he was finally stable enough to be transferred to another hospital with higher level NICU. For two weeks, we had Becca in Howard County General Hospital NICU and Ian in University of Maryland NICU. Finally, Ian was healthy enough to be transferred back to Howard County General NICU with Becca. After another week in the NICU, they both came home on Mother's Day weekend 2003. From the beginning, both kids were determined fighters going the distance to beat the odds.
We thought the worst was behind us, Brian and I started to adjust to life as a family of four. Because of his traumatic birth and developmental delays, Ian was followed by many different therapists and doctors all of whom worked with us to help Ian become the wonderful little boy he was...running, climbing, walking, talking and getting into trouble with Becca. On July 4th weekend 2009, Ian had his first major regression, he lost all gross and fine motor skills. This was the beginning of our journey to figure out what was going on with him. Over the years, we continued to see many therapists and doctors. In April 2010, the four of us flew to Utah to see a specialists in neuromuscular problems of infants and children, motor neuron disease, neurogenetic disorders and dystonia. We thought we were going to find different treatment options...it turned out that this doctor knew just from Ian's medical records and her first look at him, we were dealing with a rare neuron disease and neurogenetic disorder that was progressive, non-treatable and terminal. This was the first time Brian and I had heard those words. After years of tests and unknowns, on July 2, 2012, Ian was diagnosed with PCH1A, an alteration of the VRK1 gene or Spinal Muscular Atrophy with Pontcerebellar Hypoplasisa. So what does that mean? To sum it up, Ian had a progressive motor neuron disease which affects the voluntary muscles that are used for crawling, walking, head and neck control, and swallowing (SMA) along with an usually small and underdeveloped cerebellum, which is the part of the brain that coordinates movement. In addition, a region of the brain called the pons also fails to develop properly. The pons helps to transmit signals from the cerebellum to the rest of the brain (PCH). Ian did not have SMA or PCH, but these two rare diseases are used to describe two clusters of symptoms caused by the alteration VRK1. Much was not known about VRK1, at the time Ian was diagnosed. He was the 3rd documented case but the 4th known case in the world. Now there are 7 known cases.
Ian was imperfectly perfect. He was affectionate, brave, charming, compassionate and considerate. He was courageous, curious, dependable, determined, frustrated and funny. Ian was gentle, giving, imaginative, intelligent, lonely, loving and lucky. He was mischievous, picky, polite, quiet, rambunctious and respectful. Ian was scared, sensitive, silly, sincere, smart, sweet, talkative, terrified, thankful, warm-hearted and wise.
Yes, he had the ability to run, jump and play in the first half of his life, before the disease really took hold of him. He always had the ability to make you smile, to make you laugh and yes, even to make you yell and scream. Despite his inabilities to care for himself since the age of 9, he still kept a smile on his face and make the most out of each and every moment. He was brave and very cool. His smile and good nature let us know how kind and fun he was, how sensitive and sweet he was, how precious and special he was. He took every opportunity he could and succeeded because he was so determined and brave. He lived a meaningful inner life for a young person.
As toddlers, Becca and Ian would get into all sorts of mischief together. They would tag team in order to get what they wanted. Ian always needed to know where Becca was and if she was ok. Ian was blessed with a feeling soul and gentle heart, an old soul. Everyone else always came first, making sure we would be "ok" when he passed was top on his mind when we would talk about him going to heaven. We had many talks with him about going to heaven, all his body parts that stopped working were there waiting for him, no more machines, no more treatments and no more medicine. He would have a half smile from his lips and eyes, knowing all that he would have in heaven but all that he would not. Our answers to his questions were always the same, yes heaven had phones for you to call us. Yes heaven had a DVD player for you to watch all of your movies. Yes heaven would have popcorn for you to eat while watching your movies; YES heaven would have it all. When we would ask, "Are you ready to go to Heaven and have all of it?" Your answer until the night of September 14, 2016, was an adamant NO. That night with a look of peace in your eyes, it was YES. On September 15, 2016, at 7:00am, your physical body peacefully became whole again.
Ian loved his boy time, that meant the girls were out of the house, it was just Brian and Ian at home, they could burp and fart as much and as loud as they wanted. He was all boy...enjoyed taking things apart and trying to put them back together; getting frustrated when he couldn't get them back together or the paper he cut into millions of tiny pieces wouldn't go back into one piece again. He loved Spiderman and knew Peter Parker was in all the Spiderman suits he saw. Like Spiderman, Ian was a superhero. Except Ian was the real deal, our genuine hero whose zest for life and infectious smile inspired us all. Spiderman's creators gave him "spider-sense." The ability to react quickly to the world around him and to overcome obstacles. G-d endowed Ian with "Ian-sense." The ability to react quickly to us all as to life with his sense of humor, his courage and tenacity, and above all with his love to overcome obstacles. When faced with each new obstacle regarding his disease, he found a way to overcome them, from walking to sitting and scooting across the floor to using "Wally" his walker, to his power wheelchair to finally being carried and pushed in his manual wheelchair; from speaking or yelling to get your attention to using an amplifier to using his eye tracking Tobii to sticking out his tongue to clucking. From playing his own computer or Wii games to having other be his hands and play for him and the more violent the better. Ian was a superhero because he taught us about personal strength and character. He helped us to be patient and kind. He brought us to a deeper appreciation of compassion and understanding. Ian's life taught us all about life. We are heroes when we live to the best of our abilities in response to every challenge and opportunity. Ian was a boy who lived on his terms and not by the limitations nature imposed on him.
He was a ladies man, his head would turn and follow the ones he thought were pretty as they walked by him. On his Make-A-Wish trip, in November 2010, besides meeting Spiderman, we had to find all the Princesses for him to get his kiss from each one. His smile could light up a room, along with the sparkle in his eyes. Don't let anyone tell you that eyes don't speak, Ian could have full conversationalist with his eyes, getting all his wants and needs across, all the while mastering the teenage eye roll. Oh the mischief in his eyes, Brian and I had many conversations about how much trouble we would have been in had he not been sick. Playing legos was one of his favorite pass times, even after he lost his fine motor skills; he would read the directions and tell others where to put the pieces. We called him the "spot checker."
All of Ian's qualities mentioned above, helped him as well as our whole family continue to conquer each new obstacle. We saw each of those qualities change over his life. He also saw them change and as he grew older and wiser over the years, knew what it all meant.
Brian and I resolved early on that we would not allow this child -- our beautiful, imperfectly, perfect child -- to be "just" a statistic. We wanted his life to have meaning and make a positive different in this world. We did and still do whatever it takes to make sure that happens, just as we continue to do for Becca, making sure she gets everything and anything she needs. Awareness is something we continue to strive for.
Ian gave us a gift. More years and time than at first imagined. Deeper love and joy than at first appreciated. More enduring memories and experiences than at first expected. Believe with me. The courage, love and goodness of Ian's life will live on in the hearts of Brian and I, Becca, his grandparents, aunts and uncles, cousins, family member and friends, along with everyone who hears his story. Through our sorrow and our bonds we have started to discover the same resilience and blessings of G-d that Ian knew.
One final thought a friend shared on Facebook regarding the loss of her husband:
"Those we love don't go away,
They walk beside us every day,
Unseen, unheard, but always near,
Still loved, still missed and very dear." -- Irish proverb
What I did not know is that the women of Etz Chaim Baltimore donated a video player to the children of Shalva in Ian's memory. My emotions were already all over the place visiting there, speaking about Ian and then this...
I recently spent 10 days in Israel with Jewish Women's Renaissance Project (JWRP) and Etz Chaim. It was an amazing, life changing experience in so many ways that I am still processing most of it. One of the experiences I had was to visit Shalva, the Israel Association for the Care and Inclusion of Persons with Disabilities is dedicated to providing transformative care for individuals with disabilities, empowering their families and promoting social inclusion. Non-denominational and free of charge. Shalva's programs provide an all-encompassing range of services for hundreds of individuals from infancy to adulthood. Additionally, Shalva supports and enables families to raise their children with disabilities within the family framework. Through nearly three decades of award-winning programs, Shalva partners with government, academic and philanthropic institutions in advocacy efforts to create a more inclusive society.
I was asked to speak about Ian, to share with the other women from Baltimore, Greater Washington and a few Israeli, who Ian was. Here is the speech:
In order to understand who Ian was, a little history needs to be given:
Brian and I met during college and after 4 years of friendship began dating in 1996. In 1997, we got engaged and in October 1998 we were married. Next came the kids, our beautiful twins, Becca and Ian born April 22, 2003, born 5 weeks early.
As little girls, we all dream about our future, getting married, having kids, the house, and the white picket fence. Immediately after the twins were born, my dreams and reality started to differ, Ian's birth was traumatic, he was not breathing on his own, he needed to be intubated, his left lung collapsed and he needed a chest tube. After 8 hours of being worked on he was finally stable enough to be transferred to another hospital with higher level NICU. For two weeks, we had Becca in Howard County General Hospital NICU and Ian in University of Maryland NICU. Finally, Ian was healthy enough to be transferred back to Howard County General NICU with Becca. After another week in the NICU, they both came home on Mother's Day weekend 2003. From the beginning, both kids were determined fighters going the distance to beat the odds.
We thought the worst was behind us, Brian and I started to adjust to life as a family of four. Because of his traumatic birth and developmental delays, Ian was followed by many different therapists and doctors all of whom worked with us to help Ian become the wonderful little boy he was...running, climbing, walking, talking and getting into trouble with Becca. On July 4th weekend 2009, Ian had his first major regression, he lost all gross and fine motor skills. This was the beginning of our journey to figure out what was going on with him. Over the years, we continued to see many therapists and doctors. In April 2010, the four of us flew to Utah to see a specialists in neuromuscular problems of infants and children, motor neuron disease, neurogenetic disorders and dystonia. We thought we were going to find different treatment options...it turned out that this doctor knew just from Ian's medical records and her first look at him, we were dealing with a rare neuron disease and neurogenetic disorder that was progressive, non-treatable and terminal. This was the first time Brian and I had heard those words. After years of tests and unknowns, on July 2, 2012, Ian was diagnosed with PCH1A, an alteration of the VRK1 gene or Spinal Muscular Atrophy with Pontcerebellar Hypoplasisa. So what does that mean? To sum it up, Ian had a progressive motor neuron disease which affects the voluntary muscles that are used for crawling, walking, head and neck control, and swallowing (SMA) along with an usually small and underdeveloped cerebellum, which is the part of the brain that coordinates movement. In addition, a region of the brain called the pons also fails to develop properly. The pons helps to transmit signals from the cerebellum to the rest of the brain (PCH). Ian did not have SMA or PCH, but these two rare diseases are used to describe two clusters of symptoms caused by the alteration VRK1. Much was not known about VRK1, at the time Ian was diagnosed. He was the 3rd documented case but the 4th known case in the world. Now there are 7 known cases.
Ian was imperfectly perfect. He was affectionate, brave, charming, compassionate and considerate. He was courageous, curious, dependable, determined, frustrated and funny. Ian was gentle, giving, imaginative, intelligent, lonely, loving and lucky. He was mischievous, picky, polite, quiet, rambunctious and respectful. Ian was scared, sensitive, silly, sincere, smart, sweet, talkative, terrified, thankful, warm-hearted and wise.
Yes, he had the ability to run, jump and play in the first half of his life, before the disease really took hold of him. He always had the ability to make you smile, to make you laugh and yes, even to make you yell and scream. Despite his inabilities to care for himself since the age of 9, he still kept a smile on his face and make the most out of each and every moment. He was brave and very cool. His smile and good nature let us know how kind and fun he was, how sensitive and sweet he was, how precious and special he was. He took every opportunity he could and succeeded because he was so determined and brave. He lived a meaningful inner life for a young person.
As toddlers, Becca and Ian would get into all sorts of mischief together. They would tag team in order to get what they wanted. Ian always needed to know where Becca was and if she was ok. Ian was blessed with a feeling soul and gentle heart, an old soul. Everyone else always came first, making sure we would be "ok" when he passed was top on his mind when we would talk about him going to heaven. We had many talks with him about going to heaven, all his body parts that stopped working were there waiting for him, no more machines, no more treatments and no more medicine. He would have a half smile from his lips and eyes, knowing all that he would have in heaven but all that he would not. Our answers to his questions were always the same, yes heaven had phones for you to call us. Yes heaven had a DVD player for you to watch all of your movies. Yes heaven would have popcorn for you to eat while watching your movies; YES heaven would have it all. When we would ask, "Are you ready to go to Heaven and have all of it?" Your answer until the night of September 14, 2016, was an adamant NO. That night with a look of peace in your eyes, it was YES. On September 15, 2016, at 7:00am, your physical body peacefully became whole again.
Ian loved his boy time, that meant the girls were out of the house, it was just Brian and Ian at home, they could burp and fart as much and as loud as they wanted. He was all boy...enjoyed taking things apart and trying to put them back together; getting frustrated when he couldn't get them back together or the paper he cut into millions of tiny pieces wouldn't go back into one piece again. He loved Spiderman and knew Peter Parker was in all the Spiderman suits he saw. Like Spiderman, Ian was a superhero. Except Ian was the real deal, our genuine hero whose zest for life and infectious smile inspired us all. Spiderman's creators gave him "spider-sense." The ability to react quickly to the world around him and to overcome obstacles. G-d endowed Ian with "Ian-sense." The ability to react quickly to us all as to life with his sense of humor, his courage and tenacity, and above all with his love to overcome obstacles. When faced with each new obstacle regarding his disease, he found a way to overcome them, from walking to sitting and scooting across the floor to using "Wally" his walker, to his power wheelchair to finally being carried and pushed in his manual wheelchair; from speaking or yelling to get your attention to using an amplifier to using his eye tracking Tobii to sticking out his tongue to clucking. From playing his own computer or Wii games to having other be his hands and play for him and the more violent the better. Ian was a superhero because he taught us about personal strength and character. He helped us to be patient and kind. He brought us to a deeper appreciation of compassion and understanding. Ian's life taught us all about life. We are heroes when we live to the best of our abilities in response to every challenge and opportunity. Ian was a boy who lived on his terms and not by the limitations nature imposed on him.
He was a ladies man, his head would turn and follow the ones he thought were pretty as they walked by him. On his Make-A-Wish trip, in November 2010, besides meeting Spiderman, we had to find all the Princesses for him to get his kiss from each one. His smile could light up a room, along with the sparkle in his eyes. Don't let anyone tell you that eyes don't speak, Ian could have full conversationalist with his eyes, getting all his wants and needs across, all the while mastering the teenage eye roll. Oh the mischief in his eyes, Brian and I had many conversations about how much trouble we would have been in had he not been sick. Playing legos was one of his favorite pass times, even after he lost his fine motor skills; he would read the directions and tell others where to put the pieces. We called him the "spot checker."
All of Ian's qualities mentioned above, helped him as well as our whole family continue to conquer each new obstacle. We saw each of those qualities change over his life. He also saw them change and as he grew older and wiser over the years, knew what it all meant.
Brian and I resolved early on that we would not allow this child -- our beautiful, imperfectly, perfect child -- to be "just" a statistic. We wanted his life to have meaning and make a positive different in this world. We did and still do whatever it takes to make sure that happens, just as we continue to do for Becca, making sure she gets everything and anything she needs. Awareness is something we continue to strive for.
Ian gave us a gift. More years and time than at first imagined. Deeper love and joy than at first appreciated. More enduring memories and experiences than at first expected. Believe with me. The courage, love and goodness of Ian's life will live on in the hearts of Brian and I, Becca, his grandparents, aunts and uncles, cousins, family member and friends, along with everyone who hears his story. Through our sorrow and our bonds we have started to discover the same resilience and blessings of G-d that Ian knew.
One final thought a friend shared on Facebook regarding the loss of her husband:
"Those we love don't go away,
They walk beside us every day,
Unseen, unheard, but always near,
Still loved, still missed and very dear." -- Irish proverb
What I did not know is that the women of Etz Chaim Baltimore donated a video player to the children of Shalva in Ian's memory. My emotions were already all over the place visiting there, speaking about Ian and then this...
I was blown away by the love and support the women gave me that day and through out the trip as I continue my journey.
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