I am a caregiver mom to my two special needs, young adult, rare disease kids. I am also a recent widow; previously, I was a caregiver wife to my very ill, disabled husband. I have a wheelchair accessible van that is 18 years old. Although my mechanic son has done repairs throughout the years, it’s no longer reliable and is unable to transport both of my kids in their wheelchairs at the same time.
My sister recently created a GoFundMe campaign to raise funds for the purchase of a newer van that is in good running condition and is large enough to be converted to be accessible for two wheelchairs. We are hoping that, by sharing our story, hearts will be touched with compassion and people will be moved to help us out in any way possible, whether by a donation of any size or in sharing to reach others.
Following is a little information about the very special family that God entrusted into my care and whom I have been blessed to love and care for on a daily basis for many, many years.
My husband and I married in December of 2007. We had been friends for over 20 years prior to our marriage, and I had even been a child care provider at different times for his special needs son, Chance, whom he was raising alone after going through a divorce. I had two sons, Jason and Justin, and a special needs daughter, Krysten, from my previous marriage. I was raising them alone due to their father having some health issues that caused him to be placed in a nursing home.
About two years after Paul and I married, my mother became unable to live on her own. So, after a period of rehab in a skilled nursing facility, I moved her in and cared for her. She stayed for three and a half years, during which time she developed colon cancer and went through surgery and a very long and difficult recovery period. She never fully regained her strength.
During this time, my husband’s, daughter’s, and son’s health all took a very heavy hit. I had to have my mom placed in a skilled nursing facility because I couldn’t be there all the time with her due to being in the hospital a lot with my husband and daughter, and she wasn’t very cooperative with the caregiver in the home. After about one and a half years, her cancer returned and metastasized and I was able to bring her back to my home on hospice and care for her until she passed away 12 days later, which gave us all a great deal of peace of mind.
My two sons are grown with families of their own and make me proud as husbands, fathers, providers for their families, and simply being good men with strong work ethics.
My daughter, Krysten, is 31-years-old. She uses a wheelchair and cannot leave bed on her own. She has Rett syndrome, which is a neurological condition that causes mobility issues, cognitive issues, seizures, digestive issues, and has caused her to lose her speech and functional use of her hands. She struggles with relentless pain every day from gastroparesis and intestinal dysmotility, which have resulted in her being unable to tolerate tube feedings into her stomach or small intestines.
For the last five years, Krysten has been 100% TPN dependent, which means all of her nutrition is administered through a central line that takes it directly to her heart and disperses it through her blood stream. This type of nutritional delivery is “last resort” and comes with many dangers, such as septic central line infections (she has survived seven of these!) and liver failure (she is currently having liver issues and undergoing tests to stage her liver damage and determine what, if anything, can be done to reverse it). She has also had a colon bypass and an ileostomy.
Krysten is very feisty and has a warrior spirit. Early on, she earned the nickname “Taz” due to her energy and wild, free spirit. She has the hand speed of a ninja and can grab something she’s not supposed to have before you can blink your eyes! She makes me laugh, makes me proud, and melts my heart with her precious smiles and her never-give-up approach to life.
My son, Chance, is 30-years-old and uses a wheelchair. He has Dandy-Walker syndrome variant and cerebral palsy. He has moderate MR with scattered developmental skills, with an average cognitive and emotional development of a seven year old. However, he has savant-like skills in the area of memory. He can remember names, fragrances, and even learns and remembers words in other languages. He has an extensive knowledge of music from a wide variety of genres and can you tell you who’s singing and knows some of the lyrics before the intro is over with amazing accuracy.
Sadly, Chance deals with debilitating anxiety and panic attacks that cause him to be very aggressive due to abandonment issues and emotional trauma from his biological mom coming in and out of his life repeatedly since he was about seven years old. Due to this, he has to be secured in his wheelchair when being transported. He can’t just be sitting in a seat because if he has a panic attack it creates a dangerous situation for himself and others in the vehicle and creates risk for a traffic accident.
When his anxiety is down and he is having a good day, Chance is very sweet, funny, and oh so charming. He loves music, laughing, cologne, and, like most guys, sports cars–the Ford Mustang Mach 1 is a favorite. He loves “showing off” on Facebook when he gets a haircut. Once he learns a name, he never forgets it. To know him is to love him. I am so blessed to have become his “everyday” mom and caregiver when I married his dad almost ten and a half years ago. I promised his dad that I would always take care of him.
My husband was 58 years old when he passed away on April 17, 2018. We were married for 10 years, 4 months, and 17 days–not nearly long enough. He was diabetic, had coronary artery disease, and had a quadruple bypass a couple of weeks after we became engaged. We had a wonderful and full four years of marriage before his health started deteriorating.
By the fall of 2011 he was in end-stage renal failure and started dialysis. That was followed by a brutal six years of a downward health spiral that included congestive heart failure, diabetic ulcers, peripheral vascular disease, painful wounds that couldn’t heal, serious and sometimes septic infections, multiple amputations, heart attacks, anxiety, and pulmonary issues with dependency on oxygen.
My husband suffered greatly, and, as much as my heart was broken when he went to heaven, I also rejoiced for him–for his deliverance from all the pain he endured. I was proud and happy that I was able to keep him home, other than hospital stays, throughout his illness, because I never wanted him to be placed in a nursing home. I miss him terribly–not the suffering, but him: his laugh; his pranks and jokes; the way he was so supportive of me and wasn’t afraid to tell me how much he loved me; his orneriness; his friendship. All the things that brought us together and were the glue that held us together through so many challenges.
My name is Gynti Pinon and I am 54 years old. I go by the nicknames of Mama Goose, Goose, and SweetMamaGoose on social media. It has been my honor and privilege to be the primary caregiver for my special family. I have spent my adult life learning all the things that I need to know to take care of each of them and be sure all of their needs are met.
When I have to take one to the hospital I am usually asked, by doctors and nurses alike, what my medical background is because they can tell I know what I’m talking about and I “speak their language.” I tell them that I’ve learned by immersion due to having such a medically complex family. My knowledge and skills come from literal blood, sweat, tears, prayers, and taking it upon myself to learn about them and their diverse needs so I can give them all the best care possible here at home. I live each day to serve God and my family and do so with a heart full of love and compassion. What more can a person ask for in this life? I am blessed!