When I was pregnant with my third and last son, I only prayed that he was healthy. I say this because his brother was born allergic to everything and severely asthmatic. On his third birthday we were celebrating his 200 visit to the Children’s Hospital for acute asthma attacks, allergies or food reactions. A few years later we found out he was Autistic. So, when I became pregnant 8 years later, I prayed over and over again that this little boy was just healthy. And he is, healthy as an ox… but was born profoundly deaf. Great, I got this! That we can manage and embrace. I soon after diagnosis fought the FDA, found a Dr to go rogue, and he was the first in our state to be implanted at 9 mos old. Just to then start a very long road of therapy appointments and need for technology.
What I was not prepared for, is the cross modal neuroplasticity. His body full of spidy senses and a nervous system on overdrive all of the time. I was not prepared for life to be so cruel to him in being bullied and treated with bias at every turn. I was not prepared that being prideful and staying employed rather than on the system…making barely enough to pay rent and the basics, choosing what not to pay in order to eat meant we would not qualify for any assistance or any help. I was not prepared for the fact that cochlear parts and upgrades are not covered by insurance. Nor are any of the technology adaptable devices. Basic hearing access and tools for school…also not covered. I was not prepared for the medical co-pays for OT, PT, Speech and Audiology to bring me to thousands of dollars in debt. In addition to the years of payment arrangements made for his brothers care. I was not prepared for his dad to lose his leg in a logging accident and become unemployed and on disability unable to contribute in a financial capacity. And most importantly I was not prepared to take a personal loan out with our car as collateral to be tricked into being told it was a fixed interest when actually accruing, to consolidate debt for yet again more medical procedures.
What I am and was prepared for was to work 3 jobs and 7 days a week. I am prepared to get less than 5 hours of sleep a night and work hard to raise three disabled kids. My oldest was in a car wreck and suffered a horrible TBI and plethora of long lasting physical injuries. In addition to my middle son who is autistic and medically fragile and then my Wolverine of a lil man born profoundly deaf, cross modal, color blind, and also autistic. I feel like I need to attach proof for as crazy as this all sounds. But it is my life. I live it. And still I go to work with a smile everyday, a work ethic that feels uncommon in my generation, a kindness and ability to see others in light of what they need and how I can help and an absolute love of being a mother to my boys. But this can’t be all that is to life? To work so hard to be so broke and never catch up or even catch a tiny bit of a break. I have been making a $700 loan payment each month and less than $70 is going to principal. I am now 2 months behind and am at serious risk of losing our car. Our life line. There are no more hours in the day I can work and I am here…asking for help. Directly to the loan if preferred, a gas or grocery card or pay pal so that I can get caught up. Better yet, to help get the loan paid off! Thank you for reading and considering