USCG Family Needs Handicap Van
Donativo protegido
Six years ago my husband Dennis, who is currently serving in the United States Coast Guard, and I were caught completely off guard when we took our son Jacob to a routine well baby check up and were told that there was something “wrong” with our child. Labs were drawn and we were sent home to wait for the results. Three weeks later we were informed that our 9-month-old infant had a terminal and degenerative disorder called Spinal Muscular Atrophy (SMA) type I. The prognosis was grim. The Neurologist’s voice broke as he told us that Jacob would be fortunate if he lived to see his 2nd birthday.
For the first year or so after Jacob’s diagnosis Dennis and I lived in a daze. The depression that set in was oppressive and the tension/stress that developed as a result of living with the threat of death hanging over our son’s head day in and day out never eased up. Our pain was further compounded when our daughter, Abigail, was diagnosed with Autism Spectrum Disorder (ASD) during this time frame. When Dennis and I realized that we would never have the types of relationships that we had dreamed of having with either of our children we completely shut down. We withdrew from the world around us in a vain attempt to protect ourselves because we felt fragile & breakable and we did our best to guard our sanity from slipping further out of our grasps. Believe me when I say that we were barely hanging on back in those days. Most of the time we simply functioned on autopilot as we tried to navigate and figure out the new ins and outs of the nightmare that our lives had become overnight, where nothing made sense anymore and where we could only find peace in our dreams. We isolated ourselves to the point where we even had a hard time interacting with one another. Some pain just can’t be shared, even if the other individual is suffering with the exact same heartaches. I don’t think that Dennis or I really began to wake up again until after Jacob’s 2nd birthday, which was a day that we thought that we would never see since the doctor told us that Jacob would probably pass away before then.
By the time that Jacob turned 3 years old it finally hit us that Jacob’s prognosis wasn’t set in stone, as in he didn’t have an expiration date stamped anywhere on his body. Dennis and I felt that we could stop waiting for the other shoe to drop and we began to live and not just exist again. We let go of our old hopes and dreams for our children and we thought up new ones, which gave us the strength to face the uncertain future once more. We stopped letting our fears and the helplessness of our situation control us and instead we embraced the hope & delight that we found in each new day that Jacob continued to grow and thrive and we celebrated each little accomplishment that Abigail made.
Even though our mindsets had changed the progression of our son’s disorder did not.
Thus Jacob has NEVER been able to: hold his head up off the floor, crawl, sit, stand, walk, etc. Whatever limited range of motion Jacob had in his upper and lower extremities has slowly faded away over the years and now his hips are 50% dislocated, his legs are locked in place at a 90 degree angle, and he cannot independently lift his arms up and/or away from his torso. Jacob has also developed scoliosis because the muscles in his back can no longer properly support his frame (which impacts his respiratory system) and his digestive system (i.e., eating by mouth, swallowing, gastric emptying, passing bowel movements, etc.) requires medicines and machinery to help it continue to function properly.
As you can imagine it takes a lot to properly care for Jacob. For instance, since January of 2015 (The following number does not include Abigail’s or my own personal appointments) Jacob (and/or things that pertain to Jacob) had 37 appointments. In February of 2015 Jacob developed pneumonia (which is an illness that children with SMA primarily pass away from) and had to be hospitalized for 14 out of 28 days of the month. During this last admission Jacob received extensive and round the clock respiratory treatments in addition to undergoing several radiological tests to assess other internal issues that came to light that were negatively impacting his ability to recover. It is always a fight for Jacob’s life when he gets admitted for treatment for colds/pneumonia due to his left lung being partially collapsed as well as his physical inability to cough up secretions independently. Nothing about living with SMA is easy.
However, up and until this point in time we have managed to meet all Jacob’s needs without having to ask for assistance outside of our insurance company. Unfortunately our insurance company does not provide financial assistance for procuring handicap accessible vehicles but acquiring one has become a necessity because it is no longer safe to transport Jacob via car seat anymore. We cannot recline the captain’s chair that his car seat sits in any further back than it already is so Jacob cannot prevent his head from falling forward and/or from falling over the side of the car seat when we have to brake abruptly or take sharp turns which compromises his airway. Jacob has to stay in that painful and uncomfortable position until we can safely pull over to adjust his head. At times this means pulling over in rush hour traffic on the shoulder of a busy freeway, which is incredibly dangerous to do. Our fear is that we will get into a car accident with Jacob and he will be fatally injured due to not being properly positioned. Jacob is getting a new power chair this month and the new chair will hold his head securely and it is best if he stays in his chair during transport, but he cannot travel in it right now because our current van does not have a lift nor is it suitable for conversion. We plan on selling the van that we presently own to help fund the handicap van that we wish to purchase. It would cost approximately $60,000 for a new converted van, which is completely more than we can afford on our own.
With that being said, my husband and I feel embarrassed about asking our family, friends, co-workers, and complete strangers to help us take care of our son in this manner but we are willing to cast our pride aside and admit that it would be impossible to achieve this objective otherwise. We only have one source of steady income coming in and enlisted pay barely covers our normal bills, the ridiculous amounts of gas that we have to use to travel to and from all our weekly appointments, groceries, etc. so we cannot afford to take out the kind of loan that it would require to purchase a handicap accessible vehicle.
People have asked us why we didn’t start saving for a modified van when we found out that our son was completely handicap, which is a good question that I will answer; to be brutally honest, neither my husband nor I thought that Jacob would live long enough to outgrow his car seat. What I mean is, Jacob has outlived his prognosis by 4 years, Statistically speaking Jacob is a rare exception. Also, having two children with special needs meant that we had to prioritize what was needed and when. We have truly done our best to be smart with our limited finances but we can only stretch them so far. That is why we have set up this donation site. We do not “expect” help and/or feel that anyone is “obligated” to assist us in this regard but please know that any donation that is given, no matter how big or how small, would be greatly appreciated and help us work towards attaining our goal; The goal being to be able to safely transport our son.
Many Thanks,
The Butierries Family
For the first year or so after Jacob’s diagnosis Dennis and I lived in a daze. The depression that set in was oppressive and the tension/stress that developed as a result of living with the threat of death hanging over our son’s head day in and day out never eased up. Our pain was further compounded when our daughter, Abigail, was diagnosed with Autism Spectrum Disorder (ASD) during this time frame. When Dennis and I realized that we would never have the types of relationships that we had dreamed of having with either of our children we completely shut down. We withdrew from the world around us in a vain attempt to protect ourselves because we felt fragile & breakable and we did our best to guard our sanity from slipping further out of our grasps. Believe me when I say that we were barely hanging on back in those days. Most of the time we simply functioned on autopilot as we tried to navigate and figure out the new ins and outs of the nightmare that our lives had become overnight, where nothing made sense anymore and where we could only find peace in our dreams. We isolated ourselves to the point where we even had a hard time interacting with one another. Some pain just can’t be shared, even if the other individual is suffering with the exact same heartaches. I don’t think that Dennis or I really began to wake up again until after Jacob’s 2nd birthday, which was a day that we thought that we would never see since the doctor told us that Jacob would probably pass away before then.
By the time that Jacob turned 3 years old it finally hit us that Jacob’s prognosis wasn’t set in stone, as in he didn’t have an expiration date stamped anywhere on his body. Dennis and I felt that we could stop waiting for the other shoe to drop and we began to live and not just exist again. We let go of our old hopes and dreams for our children and we thought up new ones, which gave us the strength to face the uncertain future once more. We stopped letting our fears and the helplessness of our situation control us and instead we embraced the hope & delight that we found in each new day that Jacob continued to grow and thrive and we celebrated each little accomplishment that Abigail made.
Even though our mindsets had changed the progression of our son’s disorder did not.
Thus Jacob has NEVER been able to: hold his head up off the floor, crawl, sit, stand, walk, etc. Whatever limited range of motion Jacob had in his upper and lower extremities has slowly faded away over the years and now his hips are 50% dislocated, his legs are locked in place at a 90 degree angle, and he cannot independently lift his arms up and/or away from his torso. Jacob has also developed scoliosis because the muscles in his back can no longer properly support his frame (which impacts his respiratory system) and his digestive system (i.e., eating by mouth, swallowing, gastric emptying, passing bowel movements, etc.) requires medicines and machinery to help it continue to function properly.
As you can imagine it takes a lot to properly care for Jacob. For instance, since January of 2015 (The following number does not include Abigail’s or my own personal appointments) Jacob (and/or things that pertain to Jacob) had 37 appointments. In February of 2015 Jacob developed pneumonia (which is an illness that children with SMA primarily pass away from) and had to be hospitalized for 14 out of 28 days of the month. During this last admission Jacob received extensive and round the clock respiratory treatments in addition to undergoing several radiological tests to assess other internal issues that came to light that were negatively impacting his ability to recover. It is always a fight for Jacob’s life when he gets admitted for treatment for colds/pneumonia due to his left lung being partially collapsed as well as his physical inability to cough up secretions independently. Nothing about living with SMA is easy.
However, up and until this point in time we have managed to meet all Jacob’s needs without having to ask for assistance outside of our insurance company. Unfortunately our insurance company does not provide financial assistance for procuring handicap accessible vehicles but acquiring one has become a necessity because it is no longer safe to transport Jacob via car seat anymore. We cannot recline the captain’s chair that his car seat sits in any further back than it already is so Jacob cannot prevent his head from falling forward and/or from falling over the side of the car seat when we have to brake abruptly or take sharp turns which compromises his airway. Jacob has to stay in that painful and uncomfortable position until we can safely pull over to adjust his head. At times this means pulling over in rush hour traffic on the shoulder of a busy freeway, which is incredibly dangerous to do. Our fear is that we will get into a car accident with Jacob and he will be fatally injured due to not being properly positioned. Jacob is getting a new power chair this month and the new chair will hold his head securely and it is best if he stays in his chair during transport, but he cannot travel in it right now because our current van does not have a lift nor is it suitable for conversion. We plan on selling the van that we presently own to help fund the handicap van that we wish to purchase. It would cost approximately $60,000 for a new converted van, which is completely more than we can afford on our own.
With that being said, my husband and I feel embarrassed about asking our family, friends, co-workers, and complete strangers to help us take care of our son in this manner but we are willing to cast our pride aside and admit that it would be impossible to achieve this objective otherwise. We only have one source of steady income coming in and enlisted pay barely covers our normal bills, the ridiculous amounts of gas that we have to use to travel to and from all our weekly appointments, groceries, etc. so we cannot afford to take out the kind of loan that it would require to purchase a handicap accessible vehicle.
People have asked us why we didn’t start saving for a modified van when we found out that our son was completely handicap, which is a good question that I will answer; to be brutally honest, neither my husband nor I thought that Jacob would live long enough to outgrow his car seat. What I mean is, Jacob has outlived his prognosis by 4 years, Statistically speaking Jacob is a rare exception. Also, having two children with special needs meant that we had to prioritize what was needed and when. We have truly done our best to be smart with our limited finances but we can only stretch them so far. That is why we have set up this donation site. We do not “expect” help and/or feel that anyone is “obligated” to assist us in this regard but please know that any donation that is given, no matter how big or how small, would be greatly appreciated and help us work towards attaining our goal; The goal being to be able to safely transport our son.
Many Thanks,
The Butierries Family
Organizador
Lori Flynn Butierries
Organizador
Kapolei, HI
