I will try to take you through a brief overview of the past 9 years. It will be hard to do it justice as there have been so many hurdles as well as so much joy. Jack is the love of our lives and we will do anything to make his life as comfortable as possible while keeping him safe and not damaging ourselves along the way. We are at a crossroads in need of great financial backing to bring Jack’s quality of life to a proper place.
Jack was born with a brain injury that left him and his family devastated. He had a hypoxic event in utero approximately 12 to 24 hours before delivery. When he was delivered via an emergency C-section he was not breathing. This lack of oxygen caused his body to shut down. His liver and kidneys were failing. He was intubated to breathe and was in need of several blood platelet transfusions throughout the night. The doctors advised us that IF he makes it through the first 24 hours, he would not be able to walk or talk or even hold a spoon. Obviously this news left us devastated.
The most difficult part of the news was not only the immediate loss of the euphoria of having the most wonderful moment of our lives, giving birth to a happy, healthy baby boy, but the apprehension of what the future would hold for this child that won’t even be able to hold a spoon.
I remember vividly the day my sisters came to the hospital to take me down stairs to eat something. As we were in the elevator a mother holding her baby was wheeled in at the same time. I couldn’t understand why she was able to have and to hold her baby and I wasn’t. Shortly thereafter my husband and I were in the ICU and the nurse was holding Jack up off the bed to zero the scale to get his weight. My husband asked if I could do that because I wasn’t able to hold him yet. She was able to do one better... She took all the wires and the intubation tubing and configured it so that I could hold my baby for the very first time. You can image my delight! The pure joy of celebrating Jack’s life in my arms has never been forgotten. When the overwhelming fear creeps in, I remember that joy.
We were in the hospital for a little over a month in the PICU. After seeing all of the specialists it was determined that Jack was going to have quite a difficult life. He wasn’t breast feeding as we had hoped, his kidneys were struggling to get to 85%, his hearing was unknown and his responsiveness was slight. The doctors were not able to determine at that point how bad the damage would be but that his MRI showed “random spots” all throughout his brain. During that time we went through tons of doctors, nurses and care coordinators to plan his homecoming. We decided that there was nothing else we could do but bring him home, love him, care for him and do everything that we could do for our beautiful baby boy. And that’s just what we did.
Birth to Three came into our home to work with Jack and supervise his developmental growth 3 times a week. While we watched him miss all of his developmental milestones it was easy to push aside the emotional distress of these findings because he was still just an infant. He then started to get bigger and it became increasingly obvious that this fight was only the beginning. During his infancy we made every doctor appointment, saw every specialist, physical therapist, occupational therapist, speech therapist and feeding specialist there was to see. His specialists included and still include; his general practitioner, gastroenterologist, neurologist, orthopedic specialist, hematologist, hepatologist, ENT, cardiologist, endocrinologist, pulmonologist, osteopath and ophthalmologist. As you can imagine this was extremely time consuming, as well as financially draining, while trying to keep up with a full time job. He was a Yale baby so we did everything in house at Yale until he was diagnosed as failure to thrive. At that point we went to Connecticut Children’s Medical Center for a second opinion. They collaborated with Yale and we decided that he needed a gastronomy feeding tube which required his first surgery at 18 months old.
Before Jack, I had a great career as a Graphic Design/Marketing Supervisor in southern Fairfield County. The plan was that I needed to return to work after the (assumed healthy) baby was born. We needed both incomes to maintain our life in the home that I had purchased in 2000, which we painstakingly renovated and restored to its original form of a small 1914 farmhouse. The day Jack was born the men were installing the wood plank flooring in the addition of our home that we had been planning and working on for 3 years. This construction obviously took a back burner to our infant’s needs and we lived “in construction” for another couple of years. Fast forward to 9 years later and the construction, renovation and restoration was never completed. We just lived with it the best way we knew how and kept putting all of our time, energy, money and efforts into our son and his development.
During Jack’s infancy I tried to work as much as I could in a freelance capacity, find daycare as needed and still maintain all of his weekly and monthly health checks and therapies. You can imagine how daunting and stressful that time was. We went through 3-4 daycare situations to find that a typical daycare, even though he was an infant, could not handle his needs. This was absurd to us as parents of a special needs child because really, as an infant, his needs were not that different from a typical child. I felt so discriminated against when I received a phone call from a lovely daycare that I really thought was going to be THE PLACE to find out that they too “couldn’t handle” his needs. This baby didn’t even cry a lot…I couldn’t understand WHY they couldn’t handle it. He was G-tube fed, orally stimulated with some food and had periodic seizures. You would think that people that work with children all day and licensed by the state would be trained for a special situation. Well apparently they are not. After 3 months of a full time job that was finally comfortable with my situation, I was laid off. It then became a full time job to “fight the system” to find out HOW to get a daycare to provide for my son and find someone we were comfortable with to make sure he was safe.
Around the same 18-month mark he was diagnosed with Seizure Disorder. The neurologist explained that seizures go hand in hand with the type of brain injury that he has and it changes with growth. He started with grand mal seizures in clusters. Each seizure would last more than a few minutes so we would have to administer Diastat medication rectally. This type of medication made it almost impossible to find a daycare provider to accept him. Protocol also was to call 911 at the onset of a grand mal seizure which several providers said it was a “disruption of the group.” This of course was absurd. My prayers were answered when I got a call from a home daycare provider that was willing and happy to care for Jack. Miss Kim was her name. After a few months of preparing the provider and jumping through the hoops for the state licensing, my son was in a happy and healthy environment during work hours. He was with this provider for several years and we were extremely happy. The amount of time and effort it took to find daycare and fulfill his medical requirements was monumental and we thought things couldn’t ever get harder than that hurdle, but we were wrong. Medical challenges for Jack, such as the onset of a common cold, would bring life to a grinding halt. This coupled with trying to work to sustain our home and living expenses was overwhelming and exhausting.
At three years old he started in a typical nursery school setting, with a special needs classroom, in the Milford school system. Much like his daycare environment this typical setting was incredibly positive for him. It spurred him on to be influenced by the young children running circles around him and engaging him to play. He would chase the children around the daycare and the school while in his walker and he was growing by leaps and bounds. He was in school during the day and went to daycare in the afternoons. I was in a part time work situation that afforded me time to be able to bring him to all of the appointments, therapies and events that I needed to and pick him up from daycare at 5:00. Because of Jack’s needs, part-time was all I could handle which meant a part-time salary which set us back financially again. It was extremely difficult and stressful due to the work environment and the Fairfield County commuter traffic but we did what we had to in order to survive those years.
During that time Jacks loving and caring daycare provider, Miss Kim had to say goodbye to Jack because of her doctor’s orders. Her back had now declined and Jack had gotten heavier; she couldn’t lift him anymore. We are facing the same challenge now with Jack’s nurses. If we don’t have the proper equipment, we could lose their services.
Trying to juggle work, money and all of Jack’s medical needs and new challenges became overwhelming. My husband was able to maintain his modest job and we had private insurance through him. My employment has been fluid based on Jack’s needs. As a Freelance Graphic Artist, sometimes I was able to work full time hours, sometimes I was able to work part time and sometimes I was able to freelance from home. But mostly for the last 6 years I haven’t been able to find much work at all in my field that would understand my situation. When you fall out of the loop with your regular clients because you’re not available they move on to another freelancer that will always say, “I’m available to work”. For me that wasn’t an option. Jack’s physical and medical needs were my full time job (without pay). For the last 6 years, I’ve been trying to add to the family income as a “stay at home mom” with 2 different direct selling jobs to keep the bills from going delinquent. Thankfully, I am able to tinker with this in the evenings when my husband gets home. My husband and I have worked very hard to handle all these challenges ourselves but we are at a huge financial roadblock where our son’s needs may not be met and our home may be lost. We are in severe credit card debt just to keep our head above water with our bills. We’ve already refinanced our home after the first few years that I was unable to work so that’s not an option for us now to make the home renovations or to reduce our debt. We again/continue to feel overwhelmed by the enormity of our financial obligations and Jack’s needs. We feel like life is coming to a screeching halt and we have nowhere to turn and our son’s wellbeing is at stake.
We have found ourselves needing major renovations to our 1914 farmhouse to make Jack’s mobility possible. He is now 62 pounds and we are in danger of losing our nursing care because we do not have proper equipment to move Jack from the car to the house and from the downstairs to the upstairs to the full bath and his bedroom. We realize we are not able to continue in isolation because the debt is too great and Jack’s equipment needs are beyond our means. We weren’t able to have Jack go on Husky until 2015 so the medical bills for the first 6 years are still part of our debt. We know his medical care cannot be comprised which is why we are asking for help.
It was September 2015 when I finally got approved for the Katie Beckett Waiver to put Jack on Husky insurance from the previous expensive private insurance. This waived our financial situation at that point and put him straight on husky based on his need. Thank God a PICU nurse told me to put him on a waiting list when he was an infant.
At that point we started the in-home nursing care which was absolutely a huge help! Unfortunately it was too late to help my career. I was off the grid of available free-lancers to most and have only been able to cover a vacation here and there for the one employee that remained faithful to me. During that time we did everything that we could possibly do to maintain our jobs and pay our bills and live as normally as we could. We have struggled financially since his birth but have tried to stay afloat. Keeping a positive and hopeful attitude is a gift from God since we are in huge debt and Jack is in need. Luckily, I don’t give up easily. I have gone out and found jobs to help supplement my husband’s salary until Jack gets sick and then the cycle starts all over again.
About 3 years ago he started having hypothermia and we were in the hospital every three months for a week at a time sometimes the whole month. Jack missed several weeks and months of school trying to get a handle on this new development. It would start when he contracted the common cold or a virus. His seizures would ramp up and start clustering and then he would end up in the hospital for a month at a time. The past 3 years we have spent even Christmastime and Easter with our Yale family. In August of 2017, at the request of a dear friend we had a fundraiser for Jack at our local club. It was an amazing day…it was Jacks Jamboree, a carnival. All of our friends and neighbors came out to support us and it was incredible. The only fall back…Jack almost didn’t make it that day. He was in the hospital for 2 months prior with pneumonia, which included a surgical chest tube, that went undetected from a previous virus. We begged the doctors to let him attend and they did. One of our most fun days!
As Jack approaches adolescence we will encounter another fear inducing unknown. Jack’s kidneys will always be of concern but as he grows the doctors are not sure of their function and his life expectancy. We make the most of everyday with Jack and want him to live every day to its fullest. We need help and we are not good at asking for it. If it wasn’t for Jack comprehensive needs, we would not be asking.
As life would have it, along with caring for Jack, I was also caring for my sickly parents. My dad passed away two years ago and my mom had a stroke one year ago and we had to move her from Stamford, where I was born and raised, to Milford to be close to me. We lost mom earlier this year. I not only lost my best friend but I also lost Jack’s biggest advocate. Unfortunately, all my parents assets were used in the nursing home facility that my mom needed to survive. It has been a very emotional, exhausting and faith questioning time. I’m not sure we have the energy to continue the fight on our own. We know we need help.
The great thing about our tiny 1914 farm house is that it has very wide door jams to accommodate a full size wheelchair. Right before Jack was born we put an addition on it so that we could stay in our home unconditionally. Unfortunately, we did not know what our circumstances were going to be in the future. We have some challenges within the house that need to be addressed in order to help care for Jack and keep our nursing home care. We only a half bath downstairs so we need an elevator to get him to the second floor to bath him and put him to bed. The house is built on wetlands and we no longer have any room to put on an addition on the first floor.
We are at a frightening point in our lives where our house not being handicapped equipped and Jack’s development and growth that we are at risk of losing our nursing care. Jack is now 62 pounds and we are carrying him into the house which is six steps up from the street level. The nurses are not allowed to carry him over 60 pounds so they cannot carry him up the steps so I have to be home to get him in the house and transfer him to the chair and upstairs for bath time. Bathing Jack has become increasingly more difficult. Lifting him into the tub is back breaking for us and dangerous for him if we drop him. We need a lift to keep him safe and us able to care for him.
Jack is our world. We want what every parent wants for their child only we have many more needs and financial struggles than most parents. Any help you can give us would be most appreciated. The top priority is $35,000 for the 2 story elevator. We have raised $15,000 (including $1,000 donation from a private fund that had been board approved once we get to $34,000) ourselves but we have tapped out all our friends and family and have nowhere else to turn. I can’t tell you how much hope you have given us just to think there is someone out there that wants to help Jack. Jack’s story is written with love and lots of emotion. All we want is for our son to have a safe, happy, fulfilled life. We shower him with love but that isn’t enough anymore. The following is a wish list to help Jack thrive, the elevator being the top priority. Any help from you would be so gratefully appreciated.
Once Jack is on the second floor we will need to transfer him via a ceiling track Hoyer from the chair to a hospital bed and the chair to the bathtub chair. We have been told that insurance will cover the ceiling track hoyer and hospital bed and we already own the bathtub chair and potty chair. The elevator is our greatest need. The next financial need would be the cost of the material needed to install the elevator. The reason the elevator is the best answer is this house has a perfect corner where we can add the elevator shaft without moving any of the rooms inside. We hope to knock down one wall to make Jack’s room more spacious for his equipment and the nurses to be with him at all times. It is increasingly difficult to have no private time with the nurses caring for Jack right in the middle of our family room until midnight. We are hoping that we will be able to utilize our contractor friends and neighbors to lend a hand building for a few weekends if I can get my architect to draw up the plans in advance. The architect will cost approximately $3,000.00 based on his previous plans for the renovation. In order to complete this picture we will need to dormer out a small section of roofline to accommodate the elevator shaft. With these accommodations he should be able to move freely around the entire home and live without boundaries.
In order of importance in our daily living would be the need for a handicap van with a side entrance ramp. We have received quotes for our preferred model which is a Ford Explorer of roughly $60,000.00. We obviously were very disappointed when we heard that because we could never afford such a car. We looked into used handicapped vehicles and the condition, miles, and abuse of these vehicles verses a new vehicle. The price seemed crazy to buy a used car at Jack’s young age of 9. I truly believe that whatever vehicle we choose needs to last the rest of MY life at these prices.
The next order of importance would be process of which we get him into the elevator. Currently, because we stopped all home renovations when Jack was born with all of the unexpected medical complexities, we don’t have a driveway. We park in front of our home and there are no walkways. That of course was the next step to the house addition that we couldn’t afford nor had the time to even research. Our intention was a driveway into garage where we could park our cars. Our current needs for a garage are to accommodate the van with a side entry ramp to open and get Jack out of the car and into the elevator to stay warm and dry in the elements. Jack has hypothermic temperature issues and it’s very important for him to stay as warm as possible. This may require a covered pathway because the garage may not be able to be attached to the house. I’m hoping and praying that the architect that helped us with the addition can help us make a plan for this alteration.
Thank you for reading our story of Jack’s life. He is a handsome young man with a beautiful head of red hair and an infectious laugh. We are so happy he is in our lives. We want him to continue with his essential nursing care and his ever growing equipment needs so his quality of life can move forward. We are so grateful for anything you can do to help us help Jack.
- paula krom
- Betsy De Finis
- Holly-Ann Stowe
- Donna Husband
- Karen Barthel
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