“Life is precious. I always knew that but never understood it. When you have a child who will continue to depend on you everyday for their life - it’s a big responsibility, and I pray daily that I am able to fulfill it. I believe I’m stronger now, but also softer….”
~Daisy Vasquez Vogt~
Harvy’s Step-Mom and Advocate
I have stated the following a number of times in my writing and social media posts. That is that the love that I have for my own son with special needs has lent itself to the love that I have for the kids that battle. I suppose it’s true that being a parent to someone who has special needs is something that you have to grow into. There isn’t a school available that trains parents to care for a child with special needs. Not that this writer is aware of anyhow. Certainly, there are principles for raising any child that would apply to one that has special needs. I do, however, think that there are challenges that can’t be expected when you are given a child that is of special needs. There are more doctor appointments needed and sometimes, you have to search for answers for what you are seeing in your child. The frustration sometimes mounts as a person deals with the medical establishment. While made up of well meaning people, rules and regulations can make for some very difficult days. A diagnosis can be missed as well and that can lead to a lot of trauma. To some people, having a child with special needs may seem like a burden. So much of a parent’s time can be spent dealing with the additional challenges that come with a special kid. After all, they can’t always do what needs to be done on their own. They depend on mom and dad to assist with the simplest of tasks and those demands could last for a lifetime. To another type of parent or caregiver, caring for someone who has special needs will just be accepted as being part of life. Especially if that special person is a joy to be with. By that I mean that the person in your life who has special needs has a sweet disposition and having them in your life is a joyful experience.
When this is the case, they become the center of our attention. This has been the case with our son Benjamin. The way that we feel about him has definitely been a factor in my writing and he has become an advocate unaware for the kids that battle rare diseases. Himself being ultra-rare with a condition named PACS2 syndrome, Benjamin has been a joy to have in our home and there has been no regrets with having our lives revolve around him. It is something that we have just grown into. Yes, there have been challenges along the way with things like a bout with aspiration pneumonia and a seizure disorder. But still, I’ve said a number of times that the things that we have faced pail in comparison to what other families will go through. I’m speaking of the families that will battle a rare and fatal disease alongside their child. Regardless of the type of disorder that we might be dealing with, these kids can and most often do change us as individuals. Certainly, our plans for the future can be altered and the things that we dreamed of may never become a reality. The extra care that is required may bring about the need for a person to sacrifice their own ambitions. An individual's way of thinking can be changed and their life can be redirected. Either way, having a person with special needs in our lives will change the way we view life in general. Such an experience can also give us a specific change of direction for our life. For me, I always just took being a parent to someone with special needs as being part of life.
My focus in life was shifted to a large degree when I became aware of kids that battle rare and fatal diseases. This was through the life of one little girl who had something named Batten disease. Although I wouldn’t lay claim to being the only person affected by her life, her story became part of mine in a sense. She made me aware and knowing about her changed my way of thinking. The science concerning the human body and how it works is fascinating but a genetic defect in a child can be devastating. Unaware at the birth of a newborn, it will one day be revealed to the parents that their child has a fatal disease for which there is no cure. The two main groups of children that I have written about have diseases that fall under a category for what is called a lysosomal storage disorder. A lysosome is a small structure in the cells of the body known as an organelle and they have a specific function. A lysosome contains digestive enzymes that break down excess or worn-out cell parts. They may also be used to destroy invading viruses and bacteria. If through a genetic disposition, these enzymes are missing in the lysosomes, the cells of the brain and body store up wastes instead of them being disposed of. I’ve read that there are almost 50 of these diseases with more storage disorders being identified as time continues. I became aware of the term through following the journey of my first Batten warrior and I’ve learned more as time has gone on. Following these kids has taught me that I love writing their stories and that has not changed.
At a certain point, I decided to branch out a little in my writing. In doing so I started to get to know some of the families that battle a disease called Mucopolysaccharidoses alongside their children. Being another lysosomal storage disorder, it is more easily identified using the letters MPS. MPS has seven main types with each one having its own sub-types. Kids born with MPS will develop normally for a period of time after birth but will then begin to develop symptoms. With each different storage disorder, the body is incapable of getting rid of a particular type of waste. That is what causes symptoms that are peculiar to any type of MPS. Some symptoms are common across the types of the disorder. The journey begins as the symptoms appear and the road is traveled by the entire family. Sometimes, a diagnosis is determined quickly while in many cases, it is not. The search for answers can be long and difficult and the news of what is ahead can bring with it shock and great dismay. This next story is about a young man that has MPS VI, also known as Maroteaux-Lamy Syndrome. Small in stature but big at heart, his life has had a major impact on the lives of the people that make up his family. I will go out on a limb and say that this is especially true in the case of his step-mom. Much of her world revolves around the needs of her MPS warrior step-son whose name is Harvy. Her life has been redirected in many ways by his but excluding her desire for a cure, she wouldn’t have it any other way. Let’s get to the story now!
A World of Promise
Daisy Vogt’s life growing up could have been like a lot of girls in America. I don’t mean to write stereotypically but you know what I mean. I’m speaking of the usual activities that young ladies are involved in while growing up and attending school. Things like sports or maybe cheerleading. Going to school dances and other activities associated with being a classmate might be included. Sleepovers with friends and one of a father’s most tense times during a girl's life, that being when she begins to date boys. It was however because of her parents line of work that Daisy was not your average American girl. You see, both of her parents were in the hospitality industry, both being hotel managers in places abroad. So it was that in 1984 that Daisy was born in a place named Bad Kissingen in Southern Germany. Even though Daisy’s first language was English, she would also become fluent in German. Maybe it was only through her charming little girl presence that Daisy would gain the position of an only child. This of course had its pros and cons. On the positive, Daisy would be lacking nothing from a set of parents that loved her. It was also true though that much would come to be expected of her from a mom and dad who had high standards for their daughter. Just as it can be in any family when a child is growing up, Daisy would have to move with her parents because of a change in work position. Daisy would move with her parents to Kenya in Africa when she was only two years old. There, she would learn ‘baby Swahili’ while attending kindergarten.
At a young age, Daisy was traveling the globe it would seem. After 3 years in Kenya, her parents would move again with Daisy in tow. This was again for a change of position that was in another country. This time, they would move as a family to Thailand in 1990. Daisy would call Thailand her home country for a long time to come after that point. Her parents, Michael and Marion, thought it important to invest in their daughter in time and in every other way. They did so, including her in ‘adult’ activities in order to stay together as a family. This paid off for them in that Daisy would grow to become mature beyond other kids her age. Along the way, Daisy would become fluent in the Thai language as well and would also study Spanish while attending high school in Thailand. She didn’t know it at the time but this would come in quite handy one day. I may be getting ahead of myself here though. Daisy started her education in some of the smaller schools abroad until she was enrolled in the International School of the Eastern Seaboard. As her education continued, Daisy would shine and begin to show people that her life had great promise. Even with the hard work scholastically, Daisy also knew how to have fun. She would get involved with the arts, participating in activities like drama and dance, as well as jazz and ballet. She also had abilities as an athlete, gaining her greatest interest in windsurfing. Daisy competed in the sport and gained a lot of success, accumulating the trophies to prove it. Her future though would be shaped through her academic prowess. Daisy had concluded her time in secondary schooling while achieving a high GPA and considered where she might attend college.
Daisy had been in Thailand most of her life and had considered going to college elsewhere. That was until she was given an opportunity to attend Assumption University (ABAC) on an academic scholarship. With this, she would remain in Thailand while she completed her education. Her hard work in school had paid off and she would work on a degree in International Business Management with a minor in Marketing. As with most everything else in life, Daisy would be successful in gaining her degree with her graduation taking place in 2006. It seems that there were many facets to her life and several things that would influence her thinking for a career. One of those things came Daisy’s way as her mother had seen some information about the Elite Model Look talent quest. Daisy would enter because she had been involved in the modeling world already up to that point. This event takes place in 65 countries and that included Thailand in 2004. Daisy would enter and reaching the Thailand final, she would place 4th in the contest. Would this mean that much of her time would be spent on the runway at beauty pageants in the near future? The answer to that was no because it was during the Elite contest that she would discover that she loved the ‘behind the scenes’ part of the competitions much more. It was while Daisy was still attending university that she started to work with the management company that oversaw the Elite competition. They also managed the Miss Universe contestants when they came to Thailand.
Daisy was the official translator when the girls, along with the Miss Universe team, were in Bangkok. She loved the work and that is where her interest would go. Her plan was to move to New York city in the states. She wanted to Chaperone and manage the young ladies involved in the pageants. This would allow Daisy to travel the world with them, doing charity events and awareness campaigns. This all had been placed within her grasp and Daisy was capable of carrying this through if the opportunity presented itself. Was this to be the direction for Daisy’s immediate future or would events and circumstances change everything for her? By the time Daisy had finished school in Thailand, her parents had moved to the Dominican Republic. Daisy would go there next after she finished working with the event management company she was with in Bangkok. It’s amazing how everything can change with a single chain of events but it sometimes does. Although she wasn’t aware at the time that it happened, this is what would take place with Daisy. It was just a dinner date out with a friend in April of 2008 and they were both headed home soon. Daisy’s friend told her that he knew a guy who had a car who could give her a ride home. She would take advantage of the offer and into the picture would enter Junior Vasquez. Like Daisy, Junior hadn’t grown up in the Dominican Republic either. He was actually born in the place that Daisy hoped to go to one day, that being New York city in the USA. Junior happened to be there in the DR because his parents owned a famous radio station in Puerto Plata. He had gone there after a serious injury had sidelined his college football career.
Meant for Each Other
Daisy must have had a feeling about Junior from the very start. She states as much with this, “After my friend introduced Jr to me, I remember looking up at the sky and thinking "’you knew I wasn't gonna get to New York yet so you brought it to me, didn't you?"’ There must have been a chemistry that mixed right away with the two of them, you know, a love at first sight kind of thing. Daisy and Junior both wanted to see if there was something to their first impressions so they went out together to play billiards. It was then that Daisy would learn that Junior had been separated from his wife and he had two children, Harvy and his older sister whose name was Hilary. For Daisy, this was a big no thank you! She didn’t like children all that much and they weren’t really part of her plans. She told Junior as much and he would respond, “You will love mine” to which Daisy would soon find out that Junior “was absolutely right”. For the present though, these issues presented some challenges for Daisy. Up to that point, she had planned to leave the Dominican Republic soon and a relationship would complicate things. It’s also true that children, her own or someone else's, were not something she had envisioned for her future. Not right away at least. Daisy had definite career plans and the responsibility of raising children would hinder them. Perhaps she would have to alter those plans soon or change them altogether. The two of them would meet again for an actual date and Junior would leave an impression on Daisy from the very start. She explains, “On the evening of our first official date he brought flowers to my mom and I already knew he was going to be very different.”
As for the Junior’s two children, they would have a chance to meet Daisy for the first time when everyone went out to have pizza together. Harvy was turning 5 years old when they met and Hilary was 9. I’ll share a little of what Daisy told me about their first meeting, “I will always remember because I was the ‘gringa’ or ‘foreigner’ in Spanish and had blond hair and a much lighter complexion than they were used to. They found it hilarious that I didn't speak much Spanish and loved my blond hair.” Daisy also shared that it was Harvy that stole her heart right away with his smile. A bond would also develop quickly between Daisy and Hilary. She made it her goal to teach Daisy Spanish so that she could become fluent in their native language. This was the beginning of things for what would become a family as Junior and Daisy quickly grew to be inseparable. Junior would soon take up residence at Daisy’s place and she would have an engagement ring on her finger ten months later. As was to be expected, Daisy’s stay in the Dominican Republic was extended, by a lot! That was due, in large part, to complications that came with their wedding plans. For one thing, much of Daisy’s extended family resided in Germany and getting everyone together for such an event was a challenge. The other thing that would slow things down was Harvy’s medical issues. Let me explain. Although he had a certain amount of charm to his appearance, Harvy was smaller in stature and the shape of his head was slightly different.
Doctors in the Dominican Republic had given Harvy the simple diagnosis of Dwarfism but there had to be more to his condition. Daisy would notice things about Harvy that would cause her to wonder and she would gain an interest in things as Junior shared Harvy’s history with Daisy. For one thing, Harvy was getting sick every time that it rained. Daisy shared that “it was a given”. Harvy was getting sick enough each time that they would spend at least one night at the hospital. Dwarfism wouldn’t seem to bring with it this type of an issue. Daisy shared that Harvy had a lot of issues related to his lungs for which the hospital would place him on a nebulizer. She also shared that they would have problems with doing blood draws every time Harvy was hospitalized. They just could not find a vein to draw from. Any parent can understand how difficult this would be on a child. Why were these things taking place repeatedly? Also of concern was changes that were taking place in Harvy’s mobility. He started complaining, saying that he didn’t want to walk long distances anymore and he was getting tired more quickly. One could certainly understand that the most embarrassing problem for Harvy was that he was losing control of his bowels. All of this had to be the result of more than just dwarfism and that is when Daisy started to research the symptoms that she was seeing in Harvy. Daisy shared, “Things just didn't feel right. I didn't understand why he was always sick and thought there had to be more to it.”
Junior and Daisy were living in a place named Puerto Plata. Known for its beautiful beaches, it wasn’t necessarily the right place to be when searching for an answer in respect to Harvy’s issues. Daisy shared that the doctors had no idea what was going on with Harvy. It was during one of the many visits with a local doctor that it was suggested that Harvy be seen by a specialist in a larger city. Daisy would follow up on this in the city of Santiago and while there, MPS was mentioned for the first time. The doctor took one look at Harvy and stated that he thought that Harvy had something called Hurler Syndrome, which is a form of MPS. This doctor didn’t do a blood draw for testing or anything beyond just stating what he thought. He did, however, place within Daisy’s thoughts a name of a disease, that being MPS. Through this, Junior and Daisy would find the MPS Society of Canada who they would contact. They, in turn, would connect the family to a doctor in Santa Domingo that could have testing performed. This would involve a blood draw and that would be very difficult for Harvy to endure. Daisy shared that Harvy was terrified and was crying the entire time. The draw, however, would be done successfully and the sample was sent to Chile. The trip to have this done was 5 hours each way and the results would not be available for three weeks. Once it was suggested that Harvy had Hurler Syndrome, Junior and Daisy dived into a search for information about Hurler and MPS in general. They felt that Hurler would be a worst case if Harvy was to have MPS and they had hoped for the best.
Learning the Truth
The test results would come back and Harvy would receive a diagnosis of having MPS Vl, or what is known as Maroteaux-Lamy syndrome. Feeling that this was a less severe form of MPS, Junior and Daisy had felt some sense of relief but there would still be challenges ahead of them as a family. Daisy’s involvement with people of special needs had been very minimal up until she met Junior and his two children. She had some exposure during her family’s time in the Rotary and with various charities but that had been many years past. As a result, she didn’t possess any real knowledge but that would now change very soon. Not only for her but also for the entire family. How different life would be from what Daisy had originally envisioned for herself. That however, was not part of her thinking. She just knew that she loved this group of people that she now had in her life and she was up for any of the challenges that Harvy’s diagnosis brought to her and Junior. Harvy was diagnosed in the month of June of 2009 at 7 years of age. Both Daisy and Junior had found their way into the hospitality career field and had wanted to travel and work in different destinations. It would seem that this would now all change with Harvy’s medical needs at the forefront. After all, he would need a lifetime of assistance. A large part of life had turned into figuring out what was happening with Harvy. Now, it would be about how to manage life going forward with MPS. One thing that they did know is that they would have to leave the Dominican Republic one day in order to get Harvy better medical attention.
Life and work continued on for Junior and Daisy in the Dominican and their plans to be married would soon take shape. It was three years after they met that things would come together for them to make things official. This would take place in June of 2011, two years after Harvy’s diagnosis. They would be married in a small chapel in the DR with Junior’s family and children looking on. A month later, they would make the trip to Daisy’s hometown in Germany where they would have another ceremony performed. Daisy’s family would be in attendance this time. Another life change would take place almost right away after Junior and Daisy would tie the knot and that was that they would move to Mexico. This would afford them better opportunities and higher pay within the hospitality industry. Up until this point, Harvy’s dad had split custody of Harvy and his sister Hilary with their mother. So with only two suitcases in hand and both children left with their mother in the Dominican Republic, Junior and Daisy left for Mexico. There was an additional reason for their venturing to another country besides personal gain. They had a goal of accumulating as much money as possible for moving with Harvy and his sister to Canada, or perhaps the USA. The goal was to get Harvy started on enzyme replacement therapy and they thought that they would have to go to one of those two places for Harvy to have access to this treatment. Once in Mexico, they would get connected with the Lysosomal Society there and would also learn that ERT was available in Mexico.
This was amazing news! Daisy was the determined type of person needed to get the help that Harvy would need and she would use whatever resources she could find. If one avenue became blocked, she would find another way. Harvy’s diagnosis would also have a lot to do with the path that Junior and Daisy would follow for their future together. Of course they would organize the move for Harvy and Hilary once they found out that enzyme replacement was available in Mexico. Junior and Daisy would also find out that their insurance would pay for the treatments. Several things would have to take place before they could move Harvy to Mexico for the enzyme replacement. They would first have to find a larger apartment and then buy a car. Together, they would then have to go back to the Dominican Republic in order to explain the situation to Harvy’s mother. Junior and Daisy not only needed to take Harvy with them but also his sister Hilary who would help with his caregiving. This would be the best thing for Harvy and fortunately, Harvy and Hilary’s mom would agree to this. Along with the two kids, Junior and Daisy would bring the two cats that they had left in the DR as they all headed back to Mexico. Life is sometimes an adventure as their move would take place in 2012. After several weeks of filling out paperwork and attending appointments, Harvy would be approved to begin Enzyme Replacement Therapy. Harvy was 10 years old when he started ERT in Playa del Carmen, Mexico.
Up to that point, there had never been a child that had started this therapy in Mexico at this late of an age. Daisy would find this out as representatives of the enzymes producer, BioMarin Pharmaceutical, approached her. The fact that Harvy was able to get started was no accident. Daisy was not the type to take no for an answer and she would find her way through any red tape that existed. She also feels that God was present in that situation, opening the door for Harvy. Things have gone smoothly overall for Harvy in regards to ERT. He did have hallucinations as a side effect a couple of times at the start but fortunately, those did not last any length of time. Harvy would also get tired at the beginning after finishing with an infusion but then his body adjusted to getting them. Having a child with special needs always makes life more busy but throw into it something like enzyme replacement and you add into life a regiment that has to be maintained. You can add into that additional trips to the doctor as well. For Daisy and Junior, there would be trips to the main clinic in Mexico city that would be required for Harvy. This was because their insurance would require yearly check-ups. Harvy would have to sleep in a crib in a crowded hospital room while they were there. These trips started before the infusions and continued throughout their time in Mexico. There were a couple of trips in which Junior would have to go alone with Harvy. Any testing that needed to be done would take place during the day with the nights being spent in hot and primitive conditions.
How Life Changes
Things would change one day but the beginning was a bit of a rough going for this little family. Life would continue with Junior and Daisy both working while life also revolved around Harvy’s infusion schedule. Hilary would settle into life in Mexico, gaining friends while attending school. She would always be a valuable help with her little brother. From very early on, Hilary was Harvy’s protector. She would carry Harvy when he got too tired to walk and was willing to move to another country with him so that he wouldn’t be alone. Hilary sacrificed, giving up involvement in a lot of activities in order to put Harvy’s needs above her own desires. She had to grow up a lot faster than normal kids and as a result, she would mature into an amazing young lady. Hilary would spend her entire time in high school while living in Mexico and she would also attend a university there for a semester. It would be soon after though that the situation would again change because of the Harvy’s needs. It was also true that Mexico was no longer as safe of a place to live as when the family first moved there. The biggest factor was that Harvy would need a hernia operation and they wanted him in a place where more medical knowledge existed. Harvy’s infusions were also becoming more difficult because his veins were having a lot of issues receiving the enzyme replacement solution. Harvy needed to have a port implanted to continue. Junior’s parents and sister lived in Orlando, Florida and that seemed like the place to go. Hilary had made a lot of friends while attending school but it was also a time in which she was getting ready for the next chapter in her life.
Junior and Daisy, along with their kids, had spent 7 years in Mexico and they had accumulated a lot of possessions there. Junior’s parents agreed to take in Hilary and Harvy in Florida while their parents stayed behind in Mexico to sell everything. They then needed to take a temporary job assignment in Jamaica before settling in with the kids in Florida. All of this makes this writer’s head spin a little bit but again, it would all get done and the Vasquez family would soon be back together. Harvy would have his hernia and port placement surgeries done in October of 2018 and Junior and Daisy would finish up and move to the USA in May of 2019. That included the pets, wow! Things would get better for the most part after that. Hospital visits for infusions happened weekly both in Mexico and then also in Florida. Now, and for the last four years, the treatments would be done at home by an infusion nurse. Harvy’s port was originally placed in his rib cage because of abnormalities with his body. This was different from the normal location which is near the top of the chest. Things would change, again in 2019, as the port shifted and was no longer accessible. It would then be placed in the neck and thus the need for another surgery. Harvy would also have to have a procedure done for spinal decompression in 2019 and would require surgery for a cholesteatoma removal in 2021. He is a warrior and an amazing young man! Harvy continues to need a lot of assistance. Daisy shared that their days revolve around Harvy. He has very limited mobility and eyesight as well. He needs regular help with his hygiene, grooming, and keeping his diet healthy.
Harvy sometimes needs help with the most basic movements. Much of caring for Harvy’s needs has made Daisy better at caring for the entire family. She actually went back to school to study Integrative Nutrition in order to help with Harvy’s diet, along with that of the rest of the family. Daisy cooks fresh daily for everyone’s benefit and both she and Junior work out regularly. This is so that it’s easier to lift Harvy when needed, and also support him with his physical therapy needs. Junior and Daisy still both work in the hospitality industry but they are now able to do so from home. You see, Junior was able to land a job working from home three years ago and then was able to bring Daisy into the company a year later. They can each make their own hours and then can take turns working with Harvy. Hilary had moved out on her own soon after they moved to the states but they still see her as much as possible. Together, they would all visit New York in 2020 for Harvy’s Make a Wish trip. Daisy would finally make it to New York city! As you may have realized already, Junior is a great husband and father to his children. Daisy shared that this is not the life that he had envisioned for his son in many ways but having Harvy in their home is seen as being a blessing and certainly not a curse. Daisy shared that “Junior is a kind, honest, and very soft-hearted man”. This is even if his outward appearance may be imposing to some. Junior is from Brooklyn, New York and Daisy shared that he is highly resourceful, having a combination of both book and street smarts. He has a great sense of humor but he also knows how to take care of business. Daisy calls him their “eternal protector and provider”.
We’ve talked about Harvy’s condition up to this point but what about Harvy the person? Daisy shared that he was shy but also fearless when he was young and he “loved to play once he opened up to you”. Junior had joint custody of his kids at the beginning and they would take advantage of the time that he and Daisy had with them. Beach trips and bumper car rides were among the favorite things to do. There was also eating ice cream together and playing hide and seek in their big apartment. Daisy said that all of these things came naturally and the connection between all of them grew as they spent more and more time together. She referred to Harvy as being a “born comedian!” Daisy stated that Harvy’s sense of humor is dark but hilarious. If he insults you, it means you’ve won his heart. He’s such a character that hospital nurses remember him fondly, months after he has left! Daisy shares a little more about Harvy’s character with this along with a couple of his biggest struggles, “Harvy is a brilliant, caring, and insightful young man, captured in a body that was his greatest enemy at one point. Losing his ability to walk, I believe, has been his biggest challenge. He hates needles and having to be stuck every week, that is the second biggest.” Even with this, he has an outlook on life that carries him through. This outlook is shaped, in large part, by his faith in God. Harvy has influenced the direction of Daisy’s life and a big part of that is the faith that he and his dad have shared with Daisy. She also stated that Harvy has his moments of weakness, times of dealing with fear and anger but he has the support of a loving family.
Life Going Forward
That group includes his aunt, sister, and grandparents. Oh, and Harvy’s dog whose name is Toby the Beagle. Daisy shared, “All of us would move mountains for him. We love him unconditionally and he knows, and feels this.” Harvy knows how to work around his limitations and I know that he has to be an amazing human being. There is no fooling this guy. Daisy says that he knows what a person is feeling by the tone of their voice and this makes up for his lack of good vision. It is impossible to lie to Harvy. Daisy also shared this, “His smile and laugh are infectious and he always has a cheeky comment on the tip of his tongue. This is what makes Harvy, Harvy. He dreams about walking and pulling pranks on us, he wants to run with his friends on the beach, he loves to spend time with his family playing games. And if he could, he would do these things and many, many more.” One may ask, since Harvy is in his early 20s, is he completely aware concerning his condition and health? The answer to that is yes! Daisy told me that they have always explained things to Harvy and that they have encouraged him to ask questions and make his own decisions. Harvy is inspirational and has taught Daisy so much personally. It would be possible for a person like Harvy to give up and just accept his current situation as it is. He is however driven by goals and his faith keeps him going every day. Harvy’s main goal continues to be, being able to walk again and his parents are doing everything possible to help make that happen.
Daisy shared a little bit of a short conversation that took place between her and Harvy and also what her reaction was. Here is what she told me, “He's inspiring …. I asked him if he doesn't reach this goal here on earth (walking) if he will be sad and he said no. Because he knows no matter what, in heaven he will run. But he still wants to try .... I had to hold back the tears. That was while we were in the hospital some months ago dealing with all the UTI issues. He's such an amazing example of Pure Faith.” And that is Harvy and more. Daisy had goals that she wanted to attain as she finished college and a clear direction that she had seen for her life. Right now, her life is all about her family and helping Harvy to be fulfilled in his life. That includes a countless number of appointments and somewhat frequent trips to the hospital. Even as a couple, Junior and Daisy had wanted to continue to work in the hospitality industry and their plans included seeing new places throughout their careers. That changed as Harvy’s medical needs became more complex. Daisy shared, “I loved getting to know new destinations and I loved organizing events. Now I organize doctors and therapy plans instead.” It needs to be said though that Daisy and Junior have never been bitter over the precedence that Harvy’s needs have taken. They consider each day that they have with him to be a blessing and they’ve just made adjustments in their plans as necessary. Harvy’s needs come first and everyone is more than okay with that! Of course there is a bond that exists between Daisy and Harvy. Some might say that it's one that is more than you would expect between a step-mom and son.
Daisy explains, “Harvy and my bond is ….. interesting. We are like water and oil sometimes but he’s my angel and I am his. We had a lot of struggles, like many, during his teenage years but as he has gotten older he has grown up and knows that I will always be there for him. He tells me to ‘hush’ when I tell him off, but he also screams ‘DAISY!!!’ throughout the house when there is something funny or important he wants to tell me. We both always tell the truth, unapologetically sometimes, but that's what we love about each other and also why he trusts me, I hope.” It should be obvious to anyone who reads this story that Daisy’s life has been changed by having Harvy in her life. Her focus has changed to a large degree. That often happens when you have someone like Harvy who has very special needs. Needs that are constantly changing. A person can change and will no longer sweat the small stuff in life because they become so focused on the task at hand. Daisy’s focus is on the things that she feels to be the most important. That is Harvy’s needs and that of her family. She shared this, “We have moved countries, left family, lost sleep, fought legalities and grown in ways that none of us foresaw. But I think we are all stronger because of it and we value our family dearly thanks to that. Harvy brings life with him when he enters a room, so we try not to dwell on the difficulties but appreciate everyday instead.” This writer sees in Daisy a person that has always been driven to achieve the goals that she sets for herself.
Life has changed for her but she is still driven to achieve. Maybe now not only for herself but also for the benefit of others. She never wanted to be a mom but now, she wouldn’t have it any other way. Daisy is stronger because of the things that they have had to deal with but also softer and more caring. She is changed because of the experience. What Daisy wants to do with her life going forward is a constant work in progress. One thing for certain is that she wants to help other parents of people with special needs in the future. Those with kids that have special needs (especially moms) can sometimes forget about themselves and Daisy says that can have a detrimental effect on the entire family. Over the years, Daisy has learned a lot about how to care for the body. This was in part for being able to take better care of Harvy but she has learned things that can benefit others. For example, Daisy went back to school at one point in order to gain her degree for being an Integrative Nutrition Health Coach. Daisy also shared this, “I want to establish a wellness space that allows special needs parents to come together to rest, recharge and activate their minds, bodies and souls so that they can care for both themselves and their kids.” Daisy says that helping a mom feel better and happier can carry on to her children and the rest of the family. Moms are so important to the well being of the entire family. She is an informed person and she knows the challenges that may lay ahead. Daisy chooses to remain positive though.
There is no way to completely know what the future holds for this family but they’ve dealt with everything that has come their way so far. Has it been by accident that everything has fallen into place? Doors have been opened for them when they needed one to be there for them. Daisy used the example of the kids being able to move to the USA to be with family. This happened when things were becoming too dangerous in Mexico and they were having trouble getting Harvy’s medications. And there had been the time when they would find that enzyme replacement was available in Mexico, a place they had just moved to. This when they thought that they would have to move in order for Harvy to receive it. Harvy is fighting this battle with all that he has and he’ll give it his best. He does so with a great attitude because he chooses to and because he feels that his life is held in God’s hands. Who can argue against that? His parents are committed to seeing that Harvy has all of the help that he needs. Yes, they too love their special needs warrior with a love that is undying and there is a bond there that can never be broken. Every child with special needs is different in terms of their condition and longevity of life. They all, however, leave an imprint on us as individuals. They truly do change us by teaching us things that we never would have learned on our own. Harvy’s imprint on the lives of the people in his family is one that will last forever. I am wishing this family all the best and I am wishing that Harvy stays in the fight for a long time to come. Thanks for taking the time to read about him and his family. Sincerely,
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