Special needs families are near and dear to our hearts. Our privilege as parents includes the amazing responsibility of caring for our special needs daughter. We know firsthand how exhausting and overwhelming being a caregiver for a child with unique and challenging needs can be. That’s why we created Lot 35 Connect. It is an extension of Lot 35 Homes that meets the needs of local families by creating spaces for special needs parents.
Now we are helping our very first family.
Rick and Trish live on the Oregon coast, in a house bursting at the seams with love and fierce devotion. They have four boys, 2 dogs, two adorable kitties, and lots of medical equipment.
It wasn’t always this way. They were a typical family, carting their boys from baseball practice to friends’ houses, to church and school and dentist appointments. To say that what happened to their family was a life-changing event is putting it mildly.
Trish: “On June 26th 2016 I had just gotten home from church. Sawyer had strep throat and didn’t feel well so I was laying down with him. The three older boys had acquired a used 6 wheeler ATV just a day or so prior. Tanner was fixing a few things on it and decided to take it to the the meadow on our property. Zac and Colton decided to hop on the back. Since they just wanted to see if it would stay running, they thought it would be fine to all ride together. They got to the meadow, turned around and started back down the hill. Tanner tried to slow it down but something went wrong and he was unable to even downshift. Zac remembers Colton holding on to him so tight so he didn’t fall out and then Colton was gone. We still don’t know if he jumped or was thrown but he rolled over and over (causing the Diffused Axonal Brain Injury). Tanner ended up sideways and in the trees. Zac was thrown hard enough to be knocked out and sustained a small skull fracture. Tanner got up and saw both of his brothers unconscious.
Colton was about 20 feet up the hill from where Tanner and Zac were. Tanner was able to run to the house yelling for help. Zac was awake by the time Rick reached him but he was bleeding from his ear.
Colton was clinging to life and, thank God, Rick knew to ask for life flight right away. Paramedics were already loaded and prepared because of the Tillamook Rodeo so they got to us a lot quicker than expected. The next minutes, hours, and weeks were by far the scariest time of our lives.”
This was just the beginning of their new normal, and they wondered what life would look like going forward.
“Colton was released into our care on August 1st 2016, 34 days after his accident. He was one of the fastest brain injury discharged the doctors have seen. This is good because he was stable enough to come home, but also bad because Colton was not able to respond to commands, or “awake” enough to go straight to in patient therapy. They gave us options to send him to a nursing facility but that was never an option we wanted (or want) to explore.
Colton needs total care, including medication, feedings, changing, bathing, dressing, etc.
I have 14 years of Medical Assisting training so his care did not scare me. If I didn’t know how to do something I was taught and learned quickly.
Our house is old and needed a lot of updating before it was safe to bring Colton home. Painted shut windows, mold issues in spots, tight narrow doorways. Our friends and family rallied around us in an unbelievable way and started to work to remodel our home. For the next 10 months my husband worked all day at his job and every night and weekend busting his butt working on our home. He stayed at our house with the animals while the boys and I were housed by some friends. We spent the first 5 months in a 1 bedroom 1 bath room at their lodge. Friends brought us dinner nearly every night for 4 months since we only had a mini fridge, microwave and toaster oven! The generosity was overwhelming and to this day I cry thinking of how well we have been loved through this.
Colton had some home health services at the lodge and remained stable. He did start biting his bottom lip really badly that October and we didn’t know if it was from pain or a brain thing. He was diagnosed with kidney stones and the entire winter we spent trying to get him comfortable and keep him from getting sick and from biting his bottom lip off. I had to sleep lightly and get up with his every move to make sure he wasn’t clamped down onto his lip.
The depression and fatigue became very overwhelming around the holidays and I shut down.
We moved to a beach house in January and I felt like I could breath a little. It was a home where I could cook for my kids. They could ride their bikes and we were close to the beach, and even though Colton and I couldn’t get down there in his chair, the other boys loved it!
Colton started going to school a couple of days a week for 2 hours and has worked his way up to 3 days for 3 hours The school has been amazing doing whatever they need to do to fulfill his needs. He misses a lot of school when he isn’t feeling well. If there is a lot of illness going around at the school we keep him home. He gets physical therapy,occupational therapy and speech therapy at school and it has been beneficial to me as well for a few hours of quiet time.
We were finally able to move home as a family in June of 2017. It was bitter sweet to be home at the anniversary of the accident but I was so glad to be HOME!
That first summer after the accident we pushed to get Colton into therapy. I just felt in my gut that he needed to be pushed harder to get responses and for me it is emotionally exhausting to ask the same things of him over and over and not get a response. To say I felt defeated would be an understatement. His rehab physiatrist ordered 5 day a week outpatient therapy at Randalls Children’s Hospital. We did this for 6 weeks and felt like he was getting more consistent in responses and showing improvement. His lip biting was so significant that it made speech/eating therapy difficult. I started exploring options for treatment since I wasn’t getting suggestions from his rehab doctor. About that time is also when his 6 weeks was up and I was told we could continued doing this therapy at home. I was upset because I knew he needed to stay in the program but they didn’t agree…they want to see more improvement then he can come back.
The lip biting seemed to be the biggest issue. It’s hard to do intense therapy when he has to take medication to relax him so much he won’t bite his lip off! We tried custom lip bumpers that required general anesthesia to place. He broke it 3 times biting down so hard and finally the dental surgeon said you need to try Botox injections. Months later we finally got Botox injections and the lip biting has gotten so much better and he will get this done every 3 months.
We do our best to do therapies at home and continues with school. It has been a rough winter with 3 hospital stays in 45 days for various reasons.
The last two years have been the most trying time of our life. Colton is now 15 and still minimally conscious.
We try our best to make individual time with our boys so the focus is not always on their brother. Rick and I are not great about taking time for ourselves or each other. I do feel that we have learned to communicate better, making sure we are on the same page and we sure do value things more and take less for granted.
It’s so easy to forget to take care of yourself when you are a parent, let alone having a 130lb 5’10” teenager that literally depends on you for everything. I even randomly scratch his nose for him cause I don’t watch him to have an itch!
Everything else is just less important. I do my best to maintain the house, but honestly some days I just don’t care. I’m tired, I’m sad, I’m mad, and could care less. The boys are helpful and there are a couple of sweet little ladies in our boys life that willingly pitch in to help when they are over. I keep up on the laundry the best I can mostly because it’s in the pathway to get Colton in and out of his room.
Our bedroom is supposed to be a place of rest and peace but it has become a dumping ground for everything; the room we just keep the door shut on. The clean laundry just gets piled up and most days I avoid our bedroom altogether. It would be so comforting to have a place that Rick and I could enjoy. He worked so hard to get us home and did such a great job, he deserves a place to retreat to after a long day!! Organization, cleanliness and comfort with style sounds like a dream come true.”
If you are as moved by Trish and Rick’s story as we are, head to our Lot 35 Connect page HERE. There, you can learn more (if you’re a business and would like to partner with us, this is a great way to get in touch), and subscribe to the Lot 35 Connect email list to get updates on projects and learn about ways you can contribute.