Butterfly Kisses-Giving the OBrien Family Hope and Support
Organized by: Allison OBrien
My husband Christopher is a 35 year old man who suffers from many complicated health issues caused by a rare genetic disorder. In September of 2007, an MRI demonstrated cerebral lesions with calcification and atrophy predominantly in the left hemisphere of his brain. Neurologic examinations have shown progressive right sided hemiparesis, spasticity, and dysarthria. As a result of these medical conditions, Christopher became disabled. I was pregnant with our son, Tarl when Christopher’s unusual clinical syndrome was identified and he began to experience increasingly more physical and cognitive issues.
We lived in Plymouth MA during this time, and I was working as a Chef for Sodexo at the Plimoth Plantation. After our son was born on March 16, 2008, we moved to Rochester, NY where support from my family would be available. I realized that returning to a position in the culinary field would not be a practical option for several reasons, the biggest being the amount of time it would allow me to have with my husband and son. I decided to take full time online classes at FLCC, and was able to transfer to SUNY Empire State after completing 3 semesters with a 3.8 GPA to earn a BA degree in Human Resource Management. I was not prepared however, for the many difficult challenges my family would be facing over the next few years as Christopher’s health issues became more complicated and severe.
On August 25, 2012 Christopher suffered from a status epilepticus seizure that almost resulted in his death. After more than an hour of unsuccessful treatments, it became necessary to put him into an induced coma and on a ventilator in an effort to reduce traumatic brain injuries caused by the prolonged seizure activity. It was several days before the seizure activity completely stopped, and the doctors felt that he was stable enough to be taken off the ventilator and breathe on his own. The seizure did however; create permanent brain damage especially concerning the hippocampus. The injuries greatly affected his memory and increased his cognitive issues, weakness, fatigue, chronic head pain, and right sided spasticity and paralysis. Words cannot express the sadness I felt when he first woke up from the induced coma, looked at me, and had no idea who I was. Part of him –a huge part -of the love of my life, my very best friend, my Christopher-was gone forever. The doctors told me they were confident that his long term memory was only temporarily affected, but due to the brain damage caused by the length and intensity of the seizure his short term memory issues would never improve.
On September 24, 2012 Christopher was discharged from Strong Memorial Hospital, and transferred to Monroe Community Hospital (A Skilled Nursing Facility) as a permanent resident. Tarl and I made the 45 minute trip to visit him at least three times a week. As the weeks and months went by, Christopher became more and more depressed, I was unable to focus on my school work, and Tarl missed his daddy terribly. One night when I was putting Tarl to bed, he said to me, “I wish that I could give daddy a kiss goodnight! I miss him so much!”, and then his face lit up and said “I know what I can do! I can send him a butterfly kiss mommy”. So we both fluttered our eye lids and blew a kiss to him. Tarl fell asleep with a smile on his face that night; it was a beautiful and loving moment. A few days later when I went to have lunch with Christopher, I walked into his room and he was crying. He told me that he was so sad and lonely, that he just wanted to be home with Tarl and I, and he did not want to live any more if he had to stay there much longer (He had been there about 8 months and his doctor had no intention of discharging him any time soon). I decided that very minute that I would do whatever I needed to do to bring him back home. I met with his doctor and the social worker the next day. They told me it would take months to get the NHTD waiver approved so I would have support caring for him at home. I told them to get the process started and that I could handle all aspects of his care at home until the services were approved. He was discharged days later.
Having him back home was so wonderful, but also very challenging. Christopher's main diagnoses include; Encephalopathy, Left sided Brain Atrophy, Short term memory issues, Chronic Pain, Central Sleep Apnea, PTSD (Post Traumatic Stress Disorder), Depression, Urinary Incontinence, Neurogenic Bowel Dysfunction, Right sided spasticity and Hemiparesis, Hemiplegic Stroke Syndrome, Seizure Disorder, and Familial Hemiplegic Migraines. He also has visual defects, and other challenging physical and cognitive limitations. I have done my very best to provide excellent and compassionate care for all of his needs, to be a loving and attentive mother to our son, and to continue taking full time classes. I want nothing more than to improve the quality of life for Christopher and Tarl! My love for them cannot be put into words!
Earning a BA in HRM has been a goal that I have been working extremely hard to achieve. The degree will help me obtain a position that will improve the financial situation for my family considerably. After this current semester, I have two more left to finish the degree program. I learned over the summer however, that this is the last semester I will be eligible to receive TAP, and I have one semester left of PELL grants. The PELL grant alone will not cover the cost of tuition and books. I have been trying to figure out how I can possibly solve this problem, and have the ability to complete the last two semesters.
We have been faced with another; more urgent problem recently. Last month our car began to have major issues. The car became unsafe to drive. It is very important that we have a dependable car for several reasons other than basic family needs. It is imperative that we have a reliable vehicle that enables me to provide transportation for Christopher, to all doctor, specialist, and numerous other important appointments, as well as hospital emergencies. For these reasons, it became necessary to have it repaired immediately. The Final cost of the repairs was more than we could afford, so the only option was to fall behind with some important bills to come up with the money to get our car back.
These issues have been unbelievably stressful! The past two years our family has enjoyed celebrating the holidays together as a family, Tarl has been especially happy about having breakfast and opening presents with his daddy on Christmas morning! I will never forget how upset he was when Christopher was a resident at MCH for the holidays in 2012. He was heartbroken that Christopher could not be with us Christmas Eve or Christmas morning. It brings tears to my eyes thinking about it! Tarl was very excited about Christmas this year, and the donations we received helped to make this a special holiday for our family! Christopher had a very difficult week before Christmas. He was in bed with terrible head pain for several days. I told him about every donation, and shared with him every comment and letter we had received. He was deeply touched by the kind words and incredible generosity, and expressed to me his overwhelming gratitude! The amazing amount of love, support, and hope he has been surrounded with, gave him the strength to deal with his pain and enjoy Christmas with Tarl and I.
If we continue to receive support, and are able to reach our goal, it will have an incredible impact on the current and future financial situation for our family! Every day I try my best to keep the fire alive in Christopher, to help him stay positive, strong and hopeful of the future, and to keep our family together! Having to ask for help is embarrassing, and terrifying, but I would give my last breath for my husband and son! So, I am reaching out to you....and asking for help!
Any amount of support you can give our family will make a difference in our lives!
We would also be extremely grateful if you could help inspire kindness by sharing this link with other people you know!
Thank you for taking the time to read this!