“My children BJ & Caytie are now 16-year-olds and were part of a set of quadruplets who were born 3 months premature. Their brothers Andrew and Daniel lived for 6 and 7 days. It is a pain in my soul that I have living reminders of every day. It was the beginning of a huge life change for me.
BJ has spina bifida that was complicated by an Arnold Chiari Malformation. After nine months in the hospital he came home on a ventilator 24 hours a day. Through the years he was weaned off the ventilator and had his trach stoma closed summer 2011. Shortly after that he began having major orthopedic issues and has had a total of six surgeries since then and continues in extensive rehab. We are hoping that he will regain the ability to walk independently, but he has a long road ahead of him.
Caytie was one of those perfect preemies that many people said would be “just fine.” Compared to BJ she is doing fantastic, but she is by no means “just fine.” She developed reflux early only and I believe that caused the significant asthma that she still struggles with. She has been in SE her whole life and is doing extremely well in school because she works very hard! She also received a very late diagnosis of mild CP at 12 years old. That diagnosis explained so much and clarified some significant fine motor issues along with gross motor problems.
That’s a short version of their story and they continue to amaze me daily! I became a single parent when they were 14 months old and we moved home to IL from Kentucky. After 17 years of marriage, their father simply walked away from all responsibility. He is part of their life, but really not involved in their medical care, etc.
I have struggled through the IL Medicaid system and waivers for many years. I know that we have been fortunate to have great care of Lutheran General, but there are many services that we have not been able to get because of Medicaid. I’ve spent hours dealing with SSI and SSDI. I’ve struggled through the school system BJ’s entire life and will always be thankful for the representation of Equip For Equality. I am also a strong advocate for assistive technology across many areas of our life.
With BJ’s stabilization of his respiratory issues, I have finally been able to move away from homecare nursing. I have been extremely fortunate that I got him into the Rehab Services waiver. I am finally using PAs which has been a huge improvement in our quality of life and saves the states. I am hoping to finally return to work which has been impossible for the last 15 years of managing his care. I am also the primary caregiver for my 89-year-old mother who we live with. I am living the American Caregiver story. Out of all of this, I have developed a passion for accessible homes for all ages and family setups. I am in the process of making our home accessible for my son in his wheelchair. I am hoping to get involved with setting up homes and care for so many that need it desperately.”