Earlier I read something that
I found particularly disturbing and it also enraged me. One kidney Mom has received some media
coverage regarding her son’s kidney condition.
The child just received a transplant and is recovering. The Mom received a call from the media
contact who told her that someone who knows the Mom contacted her and told her
that donations made for her child were used to make questionable purchases. They said they bought a new car, an iPhone, a
bicycle for another one of her children….
First and foremost, the family has not received any donations. The new car was purchased with insurance
money after a car accident left them
without a car. The iPhone was less than
$1 when the Mom changed carriers because the carrier they had didn’t work at
the hospital where a lot of time is spent.
Does this Mom not deserve
transportation…..even if she did need to use donation money. Doesn’t she not need transportation for her
child for doctor appointments?
Sadly, many parents who have
had fundraisers to help with finances have faced scrutiny from others and feel
as if they have been placed under a microscope in regard to their
spending. Anyone who has questioned the
character and integrity of a parent who has a special needs child, HOW DARE YOU!!!! Are there people who take advantage of
situations out there, sure. Are there
people out there who sponge off the government, sure. On the flip side, these women in this group
share their struggles, their stories of being humbled, their stories of
fighting to keep things going.
One Mom has 4 other children
in addition to her “kidney kid”. Her
family has lost their home, she lost her job (because of needing to take time
off for doctor appointments) and had to sell things to even move after losing
her home. Her other children often do
without because of the needs of her kidney kid and it breaks her heart. It’s not fair to other children to have to
suffer because they have a sibling that was born with kidney disease! She is very frugal and shares cost saving
tips with the group yet endured ridicule for spending a small amount of money
at Walmart on some clothes for two of her children that needed a few new things,
using tax return money.
Facing this battle with Maci
has caused me to be grateful and also humbled.
I have been able to be with Maci because of unemployment and the
graciousness of people who have made donations or participated in fundraisers. I have lowered or eliminated all bills
possible, short of canceling things and getting hit with cancellation
fees. Once any contracts are fulfilled,
I will do without. I still have medical
bills, my “coinsurance", that continues to go unpaid from my hospital stay from
Maci’s birth. After my deductible was paid....I still had 20% of all medical bills as my responsibility. I sure wasn't expecting an emergency c-section along with the mountain of charges that came along with it....but such it is and the bills will be paid...one day.
Maci is on Medicare and
Medicaid. YES, she is on government
insurance. She is also on WIC, basically
food stamps for infants. I have an
iPhone….but guess what, I did NOT pay for it myself, it was a gift. I drive a pretty decent vehicle
but it’s 11 years old and it’s paid for….it’s paid for because while I was
pregnant, I tried to be smart and plan ahead.
My “planning ahead” has been what has kept us afloat so far. I continue to cut costs when and where I can
and have recently made my own washing powder, fabric softener and homemade “Shout”. I would try to do without stain remover but
with a pooping, puking, baby…her clothes would be ruined without it. I cut my dryer sheets in half
for them to last twice as long. As soon
as I am out of dishwasher detergent, I have a recipe to make my own. I stopped buying air fresheners / plug ins and
instead, set a small bowl of Fabuloso behind the toilet bowl.
My unemployment is for 26
weeks, not forever. It makes me VERY
emotional thinking about what I am going to do when the time comes for me to have
to get a job. WHO is going to take care
of my baby? She can’t go to daycare; they
aren’t qualified to take care of a child with horrible reflux, that pukes
daily, has a g-tube, who has to be given medication at certain times of the
day, who has to have her diapers weighed each time her diaper is changed. Are there people who can come to my home to
care for her, like nurses, yea….but guess what, she doesn’t qualify for Medicare
or Medicaid to cover weekly medical care.
That’s our medical care for you, that’s our government. Some states pay a parent of a disabled child
to stay home with them….it’s not much but it is more than nothing. NOT the state of
MS. Some states offer respite care or in
home support care for the disabled but in MS respite care is only available for
the elderly. Unfortunately, I am not
prepared to move to Utah, Minnesota, Illinois, California or Texas. I wish MS would offer this!!!!
The last time I looked for a
job, it took 3 months and I got that job ONLY because I knew someone who worked
there already. I am not going say what I
made per hour but I will say that if I have a job making the same amount of
money, I WILL NOT be able to pay my bills AND pay for ADEQUATE childcare for Maci. I am not trying to be pessimistic, only
realistic. Also, whoever hires me will
need to be ok with the fact that Maci has dialysis clinic once a month and I’m
there most of the day, if not ALL day.
They will need to be understanding of the fact that if something happens
with Maci that I will have to be with her.
Just last Monday we had a trip to LeBonheur because of her feeding
button coming out – something completely unexpected and we were at the hospital
until Noon.
Anyway, people have asked the
question of MY situation as to "Why fundraisers?" or "What are the fundraisers for?". NEWS
FLASH, Maci’s medications, despite having Medicare and Medicaid are not entirely covered. I do have to pay out of pocket each
month. Her diapers, cost money. Her wipes, cost money. The only diaper rash crème that works on her
is, you betcha, the most expensive, $10 Resinol (which is a very small jar, by
the way). Since coming home from the
hospital in April, even using it conservatively, I am on my 3rd jar. I even tried other stuff, tried mixing them…nothings
works like Resinol. When your baby’s
bottom is burnt, raw and bleeding, you’ll end up going with the product that
works….expensive or not. I have to use
Dial soap because it has been medically proven to be the best antibacterial
soap available in retail. You would
think that I could save money by buying a huge bottle and refilling the small
ones? NOPE, can’t do that. Over time, bacteria can potentially grow in
the bottom. So as frequently as I wash
my hands, soap doesn’t last near as long as it used to and there is no saving
money by refilling the original pumps.
This was doctor advised and I refuse to put my child at risk for
infection by saving the additional $0.47 per bottle of soap. How many of you use a towel for your kid more
than once, maybe twice? Yanno, hang it
up in the bathroom, let it dry and use it the next day? I can’t do that. Once the towel is wet, as it dries it still
has moisture which can harbor bacteria.
After a bath, I have to put the towel directly on Maci’s skin, including the area of
her dialysis catheter site. We have
already had one confirmed scare with Peritonitis and infection but it was caught
early. Continuous infections decrease
the peritoneum with the possibility of limiting the success of dialysis and
sometimes can cause you to stop dialysis all together. Do I use a towel more than once, NO WAY. Does this cause laundry to be done more
frequently?, YES WAY.
I guess the point I am trying
to make is that not all of the people getting government assistance are free
loading losers….even if we do have iPhones.
Just because the government is insuring my daughter at the moment doesn’t
mean everything is paid for. I also do
not intend to always need governmental help.
Was it embarrassing for me in the beginning, YES. Then I thought….I have been working since I
was almost 15 years old, I have ALWAYS taken care of myself since being on my
own and strived to be independent. My
family has been dealt some bad hands and there has been a time that I have solely supported my family for
a while. So I feel that during this
time, if I qualify for Maci to have Medicare, Medicaid, WIC…then heck yes, I
deserve it. Maci deserves it.
No family with a special
needs child has the same story. We all
may walk a similar path but no one walks the same, identical one. I will NEVER even claim to understand or know
what another kidney Mom completely feels or experiences but maybe, to only somewhat relate, to a similar
experience. The last thing that any of
us want OR NEED is for someone judging us, making us feel guilty for over
spending by a dime, feeling like we have to account for every dollar, assuming
that our dinner out was frivolous dining……
You don’t know who has a gift card, has been given money specifically
for them to go to dinner or to buy that item that YOU feel “is not needed”. Money from my fundraising or any donations
received is what I call “Maci Money” or "Moo Money".
That money goes to provide for Maci; directly or indirectly. It’s to buy her something she needs. It may even pay the water bill or the
electric bill because both are needed to help provide for Maci. It’s not to pay a bill so other money can be
spent unnecessarily…..not in my house.
I am sure there are some
exceptions. I am sure there are some
that might take advantage of their situations.
I can’t help but feel that those people will face a far greater judge
than anyone here on earth. “There
is only one lawgiver and judge, he who is able to save and to destroy. But who
are you to judge your neighbor?”
James 4:12
I can tell you that the Moms
that I have met and gotten to know, struggle in some way, every day, to keep
what they have or to reestablish some sort of normalcy after they lost most, if
not all they had worked so hard for…for years.
They also don’t sit around feeling sorry for themselves; they strive to
make things better for their kid(s). One
Mom I know donates her blood plasma to make extra money! So before you pass judgment on someone, be
sure that you will never be in a position like ours….that you won’t ever have
the need for help…..that you won’t ever need the support of government
assistance…..that your life is and will always be, perfect. Before you say something you can never take
back, think of how hurtful it could sound to the person you are talking
about.
“Judge not, and you will not be judged;
condemn not, and you will not be condemned; forgive, and you will be forgiven.” Luke 6:37 ESV 
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