Jack is a beautiful gift that God granted me 13 and half years ago. He was born 4 months too early so he has severe spastic quadriplegic cerebral palsy, dystonia, chronic lung disease, and auditory neuropathy. All of those things mean that he has needed a special wheelchair all of his life, he cannot walk, talk, sit, stand, or hear correctly. He cannot use his arms, hands or legs. He has been dependent on a ventilator to breathe for the past 3 years, has always been dependent on oxygen. Receptively, Jack uses sign language to understand the world around him and he reads lips. To communicate his feelings and thoughts he depends on perceptive, caring people asking him yes and no questions (which he answers by eye gaze). He also has a computer that he uses his eyes to operate, but it is cumbersome for him. Jack is a very smart and engaging young man. His body may not function too well, but his mind is that of any other 13 year old boy. He has a heart of gold and striking blue eyes –when he smiles they twinkle in a way that lights up your heart in a way that lasts forever. He has a sense of humor that won’t quit and is often labeled the funniest kid among his peers (despite being non-verbal).
Because of his condition, Jack has spent at least a month out of every year of his life in the hospital–usually in respiratory failure. Four years ago his hospital stay resulted in being placed on a ventilator permanently. That hospital stay lasted 15 months. It was heart wrenching to separated from him for so long–for me and his little brother Cooper (4 years younger). It was also a logistical nightmare since I am a single mom and we live 25 miles from the hospital (1.5 hour drive in rush hour). Trying to spend time at the hospital, take care of Cooper, manage Jack’s complex care and work ran me ragged emotionally, physically and financially. Cooper missed Jack terribly and was often not allowed in the hospital (hospital rules during respiratory season). Jack was unable to attend school and was isolated. I constantly racked my brain for ways to help him stay sane, but Jack needs another person to help him do everything. I could not be that person all the time and it broke my heart.
One of the biggest ongoing challenges of having a child like Jack is managing his care. He has special needs at school requiring constant vigilance and adaptation. He has 10 doctors, and several therapists. He requires 15 medications around the clock, and he uses many different pieces of equipment (ventilator, suction machine, oxygen, feeding pump, pulse/oxygen monitor, hospital bed, a lift to move him) and a garage full of special supplies. All of the aforementioned are supplied by 3 different companies and each month everything must be inventoried and a new order placed with all companies. Oxygen is dealt with weekly for home and school. Jack also needs near around the clock nursing care to manage his airway. The nursing staff must be managed and if it is suddenly not available, I cannot work. This is very stressful since it places me at risk of losing my jobs quite frequently.
Perhaps the biggest challenge is making sure Jack experiences life to the fullest. Since he cannot do anything for himself I am constantly scrambling to find ways to bring the world to him, and him to the world.
For the Love of Grace contacted me during Jack’s 15 month hospitalization. Just the call itself was a breath of air. I was struggling hard to make ends meet (gas expense of driving to and from Children’s daily, child care for Cooper, calling off work when Jack was more critical). And I felt alone, like no one understood how hard I was working to hang on; to keep Jack’s spirits up, to keep Cooper sane and to run my household when I was never home. It was comforting to hear that someone wanted to help. I was offered not only physical help, but spiritual help as well. I was offered a shoulder to lean on and someone to pray with. And it was comforting to know our family was being held in prayer. For the Love of Grace gave us gas & gift cards and families donated food baskets/meals and gifts for our whole family at Christmas (I felt horrible for my kids because I had neither the time nor the money, nor the emotional space to shop). I really felt like our family was being watched over. And that relieved some of the stress I was under.
Jack is home now and we are rebuilding. He is doing great and so is Cooper. Life is still hectic because it just is when you have a special kiddo like Jack. But we are together and we thank God every day for that, and the many blessings He bestows upon us–like the good people at For the Love of Grace.