I haven’t updated the blog in quite some time. I suppose I
didn’t know what to write, my brain has been going a mile a minute all the
time.
Jordan turned 17 in January and in 8 short months will be an
“adult”….let’s think about that. He is 60lbs, 5’1” and is diapered, eats pureed
food only essentially baby food, he cannot walk or talk and he will be an
adult. This scares the hell out of me. What do I do with an adult child that
cannot do anything for himself….well everything I currently do right??
In starting the transition to adult care has been eye
opening. Jordan’s entire team will change, Ortho Surgeons, Neurology, Neuro
Surgeon, No more general pead physician, his Physio, Occupational therapists
etc all change. The unit he stays in while in hospital changes, every person
that has cared for him for the last 17 and a half years changes. He can stay in
high school until he is 21 so at least that doesn’t change for him for a few
years yet. Jordan also does not do well with change or new people. He likes his
routine and something as simple as a change in caregivers can cause him to
spiral and his seizures to increase, failure to thrive increase etc.
Now let’s talk about funding, haha…basically all of the
funding he might be able to receive now STOPS! Believe me the amount he gets
now is nothing to write home about but it does help cover some of his diapers
and medications that are not covered under private medical benefits. For years I
have not even applied for many funding benefits because I figured we could
provide and we should leave that funding to the families that REALLY need it. I
quit my career to be a fulltime caregiver for my son (that is what a parent
does right). We gladly went from a 2 income family and lowered our monthly
costs to survive without my income. I slowly started my own business because I
am by heart a work-a-holic and staying at home was killing me slowly. I have
hired some amazing people to help me when Jordan needs more care and I cannot
do it all. I have come to learn as Jordan transitions to adulthood there is
zero funding for the middle class with “infirm dependents”…Is that how my
special needs son will be labeled from now on?? An infirm dependent?? Why does
that sound so harsh to me? Basically Jordan is my life, I am his life and
without me he has no options to survive other than a long term care facility…in
simple terms a retirement home. Can you imagine sending your 18 or even 25 yr
old child to live in a retirement home?? I certainly cannot. I am his mother, I
am his caregiver, his nurse, his advocate, I give him all of the essentials to
live and can’t imagine not doing so.
As my business picks up and I am faced with decisions do I
go bigger…do I take the opportunities presented to me that I always dreamed of
or do I just do what I do now and get by. Make Jordan my priority and my life.
What happens when he is gone and I have nothing? What happens when I have
completely lost who I am and I am nothing more than a caregiver. What happens
if I do take these opportunities and then Jordan gets sick again and ends up in
the hospital? Do I then have to choose between my business and being there for
my son? He has never had a surgery, a needle, a seizure, a blood draw without
me. Can I forgive myself if I am not there all the time? Can he forgive me? I
know none of us know the answer to every question life throws at us but I have
had to make a lot of difficult decisions when it comes to Jordan, can’t this
one be simple?
Why do we feel Mothers guilt, why do we never put ourselves
first, why do we question everything? I know Jordan would kick my ass for not
doing what makes me happy if he could. I know he would hug me and tell me to
trust myself. I know he would be proud of me. I also know he is my hero and I
am so scared of letting him down or not being there when he needs me.
I tell other people
every day to jump, JUMP BOTH FEET IN, follow your dreams, do what makes you
happy, fulfill your life, make your mark on this world and leave it better
because you were here. So easy to say isn’t it?
I am trying to find the courage right now to JUMP in many
aspects of my life. So please if you have any extra to spare can you send it my
way? I have plenty of strength and determination….I just need a little more
courage. Funny the woman that is scared of nothing (except spiders) is scared
of herself and her life decisions.
I have forgot about myself for a long time, I have allowed
others to forget that I matter. I have existed to make others’ lives easier, simpler,
and happier how do you go from that to making yourself happy? I know how to
make this happen, and I know what I need to do I just need a little courage.
You see I am not as strong as you think, I am not
invincible, I am not superwoman. I am a woman standing in front of a mirror
asking it to give me the courage to make myself matter……
