Imagine being a single mom of 2 teenagers plus a fulltime caretaker for a special needs disabled child and supporting them and yourself on less than $900 a month.
When I say "single mom" i mean Single mom. I don't get much help. All caretaking and decision making falls on me. Luckily we live with my father and sister so they help with little things; but I mainly do everything on my own. I receive very little state benefits because we don't pay utilities or rent.
In 2011 I had to quit my job of 7 1/2 years to care for my then 9 yr old daughter fulltime after she had her 2nd of 2 brain hemorrhages, or strokes, from a congenital malformation in her mid-brain called an AVM.
She has been left with many disabilities and still requires alot of care. She goes to school on a shortened day but misses alot due to sleeping issues, fatigue, or doctor appts.
Every day is a struggle in some way. Maureen has behavioral problems that can get extreme. Getting her up and ready for school can be a challenge and gets exhausting. She gets aggressive with me when she's tired, hungry, or overwhelmed. She has difficulty expressing herself so it sometimes comes out in the form of aggression. This is all an attribute of her brain injury. She also has physical disabilities as well as cognitive, learning, digestive, and visual difficulties.
She sees about 12 different medical specialists.
My son is very active in basketball and I try to be there for him as much as I can. Maureen used to be an incredible soccer player and hopes to be able to one day play again. Sadly, her disabilities don't allow for that right now.
With Maureen's medical needs and my son's schedule and appts, I am still not able to go back to work.
Here is a link explaining AVM: http://www.taafonline.org/am_about.html
Thankfully her AVM was treated by high powered radiation in 2011, which obliterated it so we don't have to worry about another bleed! Glory to God!
The past 4 years have literally maxed me out physically and mentally. All of my energy goes into my kids. They are my life and I would do anything for them. Being a 24/7 caretaker and mom is one of the most difficult jobs there is. It's neverending and having extreme financial stress on top of it, makes it all the more difficult.
Every month is a struggle. Food stamps run out after 2 weeks. I go without eating much so there is more food for my kids. I use the town food bank but they don't provide snacks, meat, or dairy, which is what we are lacking most. Being able to provide things like clothes, socks, underwear, toiletries, pillows, school supplies, etc is a challenge.
I tried selling AVON and T-shirts, I consign clothing, return cans and bottles, sold a car, friends had fundraisers for us but nothing has been sustaining. I try my best and that is all I can do.
Every now and then we are blessed by neighbor's and friends with food or gift cards. My father helps with food and gas but he is retired and on a limited income himself and I can't rely on him to provide for my kids and I on a monthly basis.
On Tuesday, June 16th, Mo and I will be traveling to Boston Children's Hospital for her 1st eye muscle surgery. She only has 1 functioning muscle in her right eye that pulls her eyeball to the right. The surgery requires splitting that muscle, pulling it around the back, and reattaching it to the lest side, centering her eyeball. It is a very complex, rare surgery that hopefully will work. We will have to travel back to Boston a few more times for an eyelid surgery and follow-up appointments.
We are very lucky and blessed Maureen is still here with us today and, believe me, this is something we never take for granted. Every year, we have a Celebration of Life on Nov 18th to appreciate life and how easily it can be changed or taken away.
Maureen has come so far and continues to amaze us all the time. Her spirit and determination are unwavering. She is such a joy and blessing to anyone who meets her. She is my best friend and some days are extremely challenging but I give thanks Every day to God for giving me an incredible, sweet, loving, silly girl, who I would be lost without. She has taught me the value of true unconditional love, patience, and perseverence through the most difficult of times.
We Thank you Very much for taking the time to read our story. Prayers are Always welcome and Appreciated!!!Thank you, thank you and God bless!
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