Just be her Mom? 

Thinking back to a social media post I shared about being a mom and all of the duties that come with that title. The post was about all of my day to day duties and everything that goes into raising and caring for my daughter who has significant special health care needs. I thought about how I, as her mom, complete daily tasks that several professionals would do individually in another setting. Examples: nursing to handle medicines and tube feedings; respiratory therapist to handle breathing treatments, suction, cough assist and chest percussion therapies; a physical or occupational therapist would handle stretches, massages, and other movements that help with muscle tone and spasticity, her scheduler managing numerous appointments to doctors and specialists. Those are just the medical side. She still needs the things that all human beings need and want: shelter, cleanliness, entertainment and most of all love. 

When you are a single parent and doing all of those things daily; just being her mom gets lost! I find myself “on the clock” more than ever. It all seems to be heightened since living through a pandemic for almost two years now. There is no escape from or break in the daily routine. No days to sneak away to the movies. No Target runs that lasts for hours at a time; with Kerstin enjoying people watching and listening while browsing the clothing and accessories. Yes, her momma got to enjoy the treat of a Frappuccino from Starbucks and checking out the clearance endcaps. Those things are so dearly missed as we continue in our pursuit of keeping a young lady who has multiple disabilities, one being Restricted Lung Disease (RLD) safe and as healthy as possible.

Just be her mom? That is hard to do when, 24/7, I am wearing so many hats with barely any break in the cyclical nature of each day. We are not going many places, as I mentioned earlier, to break the pattern often besides doctor appointments, drug store runs and grocery drive ups. There are no vacations or holidays. Even on those days, you, mom-caregiver are always “on the clock”. We are not making visits to the homes of family or friends and there are rarely visitors to our home, for the obvious safety and health concerns. The things we are doing for “fun” still keep us safe at home: new movies when they are available to stream or yard meet-ups with family when the weather is nice and health permits. 

Just be her mom? In order to do that safely, effectively, and efficiently, mom has to think of herself as well. The things that I do to pamper and comfort my daughter are some of the very things that I need for myself. This is why self-care, self-love and mental outlets are so critically important. As parents of children with special health care and disabilities, we are often reminded of the quote, “You cannot pour from an empty cup.” There are so many days when we are on our hamster wheel, running on fumes and seemingly going nowhere, we must remember that in order to be top notch we have to me caring and considerate of our own well-being.

The act of looking after the care of another who is either sick of disabled is “caregiving”. While providing care for my daughter is expected and required, doing it non-stop and as a single parent can be tasking. Exhaustion is real and it is not just physical. Burnout can set in and cause a parent/caregiver to be less alert. This weariness can potentially be harmful for the person we are caring for when their needs are not met in the proper manner.

 Just be her mom means that I am taking care of myself. Yes, enjoying the journey of growing knowledge of what it takes to care for my daughter and all of her needs. Advocating for her care, health, inclusion, rights and more. In doing all of those things for her, I have to do them for myself as well. Take breaks, read some fiction, stream a series or two, get outside to look up at the sky, feel the breeze and the sun on your face, grab that macchiato or latte or Frappuccino. Do something you love! Talk to someone, professional, if you feel that is what you need. Take care of YOU, holistically. Keep that quote, close to your heart and in memory; keep your cup as full as possible, that is the best way to just be their mom, dad, sister, brother, grandmother, aunt, uncle, etc..

Coming from the heart!

     We've all seen what has been in the news as it pertains to healthcare.  The United State House passed their version of a healthcare bill back in May that will take away the healthcare of millions of Americans. The bill would drastically cut Medicaid, which is the sole form of health insurance for so many.  In other cases, it is a secondary insurance for many families that receive their health insurance through work and other forms. Now, we had the Senate republicans release what they are calling the Better Care Reconciliation Act that will be just as devastating to so many people and not just those relying on Medicaid.

     Everytime I think about the potential cuts to Medicaid and the affects it could have on not only my child but others as well, I'm reminded of what Jim Carnes of Alabama Arise said as it relates to Alabama.  He said that the state itself can be considered to be on Medicaid; if you have doctors leaving the state because of cuts.  When that happens, my child isn't the only one affected by that pediatrician that has left but, the one that is on Blue Cross is as well...as it may be the same doctor. Lets look beyond the doctors and look deeply at the overall affects.

     As you all may already know, Kerstin has a feeding tube, and it is the only way she gets nutrition, and her medicines to live.  All of her medicines, feeding tube(s), extensions, syringes, nutritional formula, gloves, diapers, wheelchair, bath chair, hand splints, neck support(s), AFOs, therapists, specialists, glasses, dentist, ophthalmologist,nutritionist and so much more is covered by Medicaid.  Completely covered!  If it was not for Medicaid, these costs would be devastating on our family.

     Recently, I had to do some paperwork after changing medical suppliers for Kerstin and the forms I needed to sign came with a complete breakdown of the cost of her feeding supplies.  Per nutritionist, Kerstin is to have 3- 8 ounce boluses of her nutrition and 1- 6 ounce bolus; the formula comes in 8 ounce containers that cost $9.33 per container or about $224. 00 per case (she gets 5 cases per month), her bolus syringes cost $650 per month, the feeding extension costs $100.00 and the 'button' (feeding tube) costs $300.00.  These costs DO NOT include any of Kerstin's medicines.

     Now, as titled "Coming from the heart!", I am coming from my heart with this entire post.  We've all heard and some may have even said things like "Medicaid shouldn't be given to the lazy", "these people need jobs" and so much more.  Well, I'm not lazy, I can't be, I have a daughter that is completely dependent upon me for her daily living care, even on days when to quote a line from "The Color Purple Musical", 'I wanna sit and do nothing', I can't.  I can't take on a full time job outside of our home because of her needs and care.  I have a part-time job and I am also continuing my education online.  Kerstin is a minor child on Medicaid...know any jobs for her?

     Kerstin's life depends on Medicaid.  Without it, she would not have had the medically necessary surgeries she's had, including the g-tube surgery that I fought against, out of my own fears.  Kerstin is thriving and surviving because she gets the much needed care provided through Medicaid.

     It's not too late to make your voice heard about healthcare!  Call, text, write, tweet and do it again!

#IAmMedicaid