We need a Village

A little over three years ago I was blessed to become the momma of an amazing little boy with Down Syndrome. Jake was delivered two months early with a rare condition called chylothorax. He had lymph fluid in his lung cavity. Therefore inhibiting the growth of his lungs. He started life on very intensive life support. What a fighter he is, after two months in NICU, he came home. Those of you who know Jake and I, know that life, although filled with many moments of great joy...has been also filled with many illnesses, moves, debt and uncertainty. Jake's first year was spent under doctor ordered hibernation. Soon after I was diagnosed with a rare heart condition that required immediate medical attention. We tried to move back to Colorado, from SD at that point to enlist his father's help while I recovered. Well, we ended up moving to Arkansas to get the help we needed from his dads family instead. Jake at this point was a year and a half and not walking or eating solid foods. He did receive extensive therapy through a Medicaid funded program there and has come along way. That first winter in AR however was very rough on Jake's health. We lived in a camper and keeping it warm enough was a constant challenge. Jake had two hospital stays and numerous doctor visits during this time. Summer wasn't much better, being in constant air conditioning he was always fighting some sort of infection. I also recently had another medical emergency. I found out that I have vertigo after becoming very unbalanced, getting quite ill, and blacking out in downtown Little Rock. Yet another ambulance ride. I have worked as much as I could over the past year and a half while being the sole caregiver to Jake and dealing with both of our health issues. He is now a little fire cracker. While he has made leaps and bounds in his development, he tests with OT, PT and Speech Therapy between 12-18 months. Jake does not yet talk and rarely will use sign language. He is also years away from being potty trained. I was for a time, commuting 100 miles a day, to Little Rock, working night shifts to try and get ahead. Because it was affecting Jake's behavior, I had to switch to a day schedule that was in line with Jake's daycare. I had hoped moving to the city from the small rural town we were in was the answer. I began sinking further in debt. After two months we lost our apartment as I could not make rent. After a year and a half in Arkansas, I had no community and no resources. I needed to come back to Colorado where I had lived most of my adult life. Jake and I needed the love of old friends. It also was a place I had to land. A friend has been kind enough to lend us a camper to stay in here in Salida. But the challenges keep mounting. My bank account is negative, my credit cards are maxed. The ten year old van I drive needs yet more repairs and I still owe twice as much as it is worth. I have creditors calling daily about unpaid medical bills. We also need to come up with lot rent so we have a permanent place with hook ups to park the camper. All this while trying to find daycare and a job. As well as dealing with custody issues. Jake's dad has only seen him four days in the past year and a half. My friends, I'm exhausted. I'm sad. But hopeful. I want to be able to provide a good home and a wonderful life for my sweet boy. If you can, please help us get out from the ocean of debt we are drowning under. So we can move forward, settle in, and take a breath. I look forward to becoming a part of this amazing community and to share my love of these beautiful mountains with my son. Thank you so much for hearing our story, much love, Jillian and Jake