Murphy Family

by Sara Raynor

The Murphy Family has been a part of FEATT from the very beginning. Jennifer was a part of the first Board of Directors so she is a founding member of our community. She said that the support they had from the community through the early days of her childrens’ diagnoses meant so much to them and helped them through such a difficult time. The Murphys live in Winston, Jennifer and Patrick are parents to Preston, who is eight years old and Parker who is five years old.

Both children have developmental needs and medical needs. The family relies on their trusted team of doctors at Doernbecher Children’s Hospital as well as CLCM, and the teachers and therapists assigned locally. 

Preston was born with Down Syndrome. He also has several autoimmune diseases, deafness in one ear, and has had to undergo open heart surgery at a young age.

Parker was diagnosed with Autism and Type 1 Diabetes. Diabetes is a new diagnosis for him, and the family has had to adjust to glucose monitoring, counting carbs, insulin injections and keeping a close watch on his symptoms since February of this year. 

Because of the medical vulnerability of the children, the COVID situation has left the family with few options. Even if they could find a DSP that was medically trained to take care of Parker, they cannot take the risk of outside exposure that a person coming from outside the home would introduce. This is why they are strong advocates for allowing parents to be paid caregivers wages. Taking care of two medically fragile, special needs children is more than a full time job for Jennifer but they don’t want to lose the medical coverage that Patrick’s job provides.

Both parents worked with special needs adults before they had children. They love being parents to these awesome boys! They wouldn’t mind being their permanent, full-time caregivers and had a hard time finding qualified help before the pandemic. They had a good DSP but she moved away. Between the kids they qualify for over 600 hours of people coming into the home to help but they cannot risk it right now. They are hoping Oregon will join the nine other states that are paying parents of minors with disabilities to be their caregivers.
 

Though they are taking all precautions, they make sure that the children enjoy a full family life. Preston and Parker are two very happy, loving boys. As a family they love to go for drives and for walks. Every year they try to do at least one big beach trip. When they go to the river, they love to sit and throw rocks into the water. They also try to think outside the box to give the boys a variety of experiences. Last year they arranged for drive-up trick-or-treating, where they pre-planned to go to specific family members’ houses and they had gifts ready for them.

Preston and Parker are both full of life and eager to learn and laugh. They both love to watch movies and play in the backyard. They take turns on the special needs bicycle and they love to build marble runs. They have an indoor sensory swing that gets a lot of use. Each of them has their own room decorated with their favorite things. Neither of them really plays with the other but they don’t bother each other either. Parker shows concern when Preston is upset and will say “brother needs help.” Both children seem to have the purest form of love and they are happy with the simplest things.

Preston is nonverbal but expresses love and joy in his own way. He was going to CNC at Fir Grove but will be doing virtual school this year. Preston loves his dog, a Maltese named Jackson. He always has his rainbow slinky in his hand and he really likes puppets. He is smart and tenacious. He loves to ride in the big truck with Dad and is a bit of a thrill seeker. 

Parker is really into animals. He collects animal figurines and lines them up. He used to like to go to Coastal and choose a new animal figurine. Having to medically isolate themselves, they now order them on Amazon and let him choose one from the home. Parker likes to do woodworking with dad. He is very creative and enjoys making art, though he tends to be a perfectionist. 

Both of the boys show perseverance and joy, even through hardships. They were hoping to go back to school this fall, but Jennifer is sure they will adjust well to whatever they face. The family gets groceries through curbside pickup or delivery. They are determined to keep the boys safe through the delta surge. They know they can’t control everything, but they take care of what they can plan for in their situation. 

Jennifer is a planner but she has learned to take things day-by-day. She exercises a lot of self-care to keep up with her demanding lifestyle. She stays organized with a calendar and lists that she prioritizes by importance and urgency. She makes sure to get good sleep so she can maintain patience throughout the day and stay level-headed and in the moment. She says she has so much to do but what really needs to be done gets done. Sometimes she has to shift the routine if something isn’t working, and it may not look the same every day. She has learned to roll with it and adjust. She says it’s good to make time for yourself to grieve or process, but then to get back to it.

She wants others to know that there is always someone else who has been there before you. If you can find that person to talk to and walk you through it, you won’t feel so alone. One of the best experiences was going to the Down Syndrome play group for the first time when Preston was just a toddler. She said they were nervous at first, but came out of there so hopeful of their child’s future. When Parker was first diagnosed with Type 1 Diabetes, she found another family in an Oregon Autism group that also faced ASD and Type 1 Diabetes. They keep in touch and answer questions for her. Usually people want to help others who are going through the same things they went through because they know how hard it was. Even the local Roseburg diabetes group reached out to her and gave her some great tips and offered to bring supplies. There are ways to make it easier by reaching out. You find out you’re not alone and it’s Okay to be different. Once you see it’s Okay to be different, it all comes together and life gets easier.