We need a miracle - Please Help!
Dear friends.. The story of love
Thank you all for your kind thoughts.
In 1974 my daughter was born with Spina Bifida and Hydrocephalus. She is also epileptic. We have come a long way since that stormy morning she was born with her spinal cord herniated outside of her vertebrae with no skin covering it. I was told she would not live out the day. In spite of countless life endangering surgeries and medical issues Dee championed life and surpassed expectations for Recovery. She is not only my daughter — she is my HERO.
My daughter is my teacher. She has taught me to try even when all is against success. She has taught me to speak up and push forward. She has taught me that true love is about caring for one another.
When Dee was 10 she no longer wanted to go to public school because she wore diapers and had to go to nurses station for changing and to get her seizure medicine. Kids are cruel and would taunt her. She walked with loffstrand crutches and sometimes trip. Sometimes she was tripped intentionally.
So I placed her in a school for physically disabled children that was a phenomenal place called The Massachusetts Hospital School. She learned how to dance and she could play kick ball,hopscotch, and she used a wheelchair to play basketball. She went to the Special Olympics in San Fransisco one year with her team and no I did not go.
Dee met her soulmate and future husband at this school. Chris was in an iron lung at that time. At 8years old he was struck with Duschene’s Muscular Dystrophy. He lived to be 45 years old. He came out of the iron lung because of an operation that allowed him to use a portable respirator. He lived at a rehab hospital at leaving the MHS where him and Dee became as close as two peas in a pod.
When they married. In 2001 their marriage could not be legally entered with the State register as Chris needed life support care 24/7. But they had a ceremony and a reception with about 50 people in attendance. The hotel/restaurant donated the entire reception to them. A minister performed a spiritual union ceremony.
Chris’s mom danced with her son and I danced with my daughter to Bette Midler’s “You’re my hero”. We presented them with a money tree in stead of presents. They usedthis money to go out to concerts, movies, and dinner over the next two years. It cost money to have a life support van transport them to outside activities if it was not covered by the Rehab Van. They gave dinner parties at all the usual holidays.
Dee was wheelchair bound but she could move out of chair with great upper body strength. She would get on his hospital bed and wash Chris’s feet for him and she learned how to suction him.
We all learned what love truly was about. We had to assist them but they never gave up taking care of what they could. Chris was able to guide her intellectually and emotionally always be there for her. He was as much a son to me as my own. He sadly lost his battle with MD in 2015.
Any strength I have came from those two teaching me to go forward. I owe the best part of me to just never giving up. I will have to die before I will ever not be there for her. She has taught me to expect myself to do better no matter how broken or lost I might be.
I have tried to give her a home no matter what and we have huge “no matter whats”.
I started this fundraiser so I could give her some comfort and keep her with me as her medical needs swamp us. But it never gets very far off the ground so I just do what I can. We get a little help here and there.
My only regret is that I can’t take her pain and carry it for her.
In December of 2017 she had emergency surgery that has left her bedridden. I have been trying to get her back to baseline for months but infection keeps setting her back.
Unfortunately I have been suffering from medical issues myself. At 69 years of age it’s not as easy to bounce back and ignore pain, but my love for my daughter keeps me going. I need help to bring her home and keep up with our living expenses and medical supplies that Medicare does not pay for.
If we were fortunate enough to raise enough funds I could hire a private duty nurse to provide support and keep us together. If we raised more than enough I would use it for first and last month rent on an accessible apartment that was more like a home. Right now we are in a small studio. But regardless we are grateful even for small donations that help with day to day items.
To get a better idea who Dee is review all the photos. I try to post updates frequently.
We appreciate any and all kindness and support.
We need this bed. Full electric low to high
The good news: Dee is fighting as hard as she can to get back in her chair. The not so good news: Her hospital bed is old and not working - the motor is burning out. Medicare will not repair it nor give her one that moves up and down as well as raising the head. She can have the old fashioned kind you crank up yourself. Now she can not crank up a bed and neither can I. Her ability to get out of bed depends on her bed moving up and down, as does her medical treatments. One step forward three back.
I am almost 70. I can barely ambulate. I have taken care of my husband who was a double amputee above the knee, my daughter who is above in this picture and now bedridden. I have a son who was hit head on while riding a motorcycle and suffers horrific headaches because of hairline fracture and blood clot. I just was told that Medicare won’t pay for orthotics to help with my weak ankles and neuropathy in my feet. It is like I woke up one day last year to an alternate life. I do not drink or do any kind of drugs or smoke cigarettes. I need to be able to ambulate to help Dee.