I know I write about this a lot, but this is a major part of
my life and it’s hard not to. Special needs moms don’t get enough credit in my
opinion. I don’t think anyone can fully understand what we as parents go through.
I’ve never been to a day of nursing school, but I can perform a lot tasks that
nurses go to school to learn and sometimes don’t even learn it until they graduate
and get a job. In 11 years I have become a pro at a GJ or Gtube button, feeding
pumps, catherization, seizures, medications, and many other things and now PICC
lines. We as parents do not get formal training or any special training. Most
of the time when something comes up we see a nurse or someone from a medical
company and are given a brief demonstration and then sent home with tons of medical
supplies and phones numbers if we have questions but are left to learning a lot
of it on our own. Dreaming for a “normal” day would never be considered normal
to a typical family with healthy children. This past hospital stay was a lot of
firsts for us. In 11 years Skylar has never had to have a blood transfusion or
had to be intubated for a period. I feel fortunate that she only had to be intubated
for about a week. Although I knew what to expect when I got back into her room in
the PICU, it still hits you like a ton of bricks and I just broke down. My biggest
fear was that she’d not be able to breathe on her own and come off the vent. There
have been conversations of a trach before but never to this extent and I just
feared that she’d be on the vent for an extended period and they’d end up
having to trach her to get her off it. She has a way of proving people wrong
and showing them that she doesn’t like to play by the rules. Once they start talking
about something she has a way of showing what she’s capable of. This was a
different experience for me as a mom as well. When she’d go into the hospital
in the past there was never a question of where I was going to be. I never left,
and I had no desire to leave. However, this was the first time that I had
another child to consider and we have not had a long hospital stay like this
since Sawyer was born. It rocked his world
too. He is too young to understand why mom and sissy are not coming home and
why he’s having to spend his nights at the hospital. Towards the end if was
extremely difficult. The hospital was no longer a place he liked to come and
play and see everyone it became a place that he dreaded. He’d leave each night
without all of us as a family and he didn’t understand why. The first night I
came home was the first night I had ever left her at the hospital all night
long. I have left only 2-3 times to go to dinner or run home and get clothes but
never all-night long. I know Skylar very well. I can have educated
conversations with doctors and I more than understand her condition. I have
heard many times that my knowledge as a mom is impressive and they assume I
work in the medical field by the things that I know and the things I ask. I say
that because I know Skylar and to leave her is scary for me because I know what
questions to ask and how to tell when she’s in pain by looking at her heart
rate. There are things that I know about her because I’m her mom and I’ve been
around her and most people would never know to look for it or know about it
because they don’t know her. I’ll admit when it comes to her I am a control
freak. I’m sure if you ask my family they will say that I am a control freak
about more than just her. However, that first night when I got home with Sawyer
I cried on the way home and I really broke down when I got home. It felt empty
and even though I knew she was at the hospital I had this feeling of this is
what it would be like without her and it took my breath away.
It’s also hard to not only be a special needs mom but to try
to work full time on top of that is extremely hard. Having a child with chronic
medical issues is full time. I don’t like to say job, but it consumes your day.
There are constant phone calls with doctors and doctor’s visits and you are
trying to balance your work life with your personal life. You feel guilty for
not being at work but not guilty enough to not take your child to the doctor. You
send them to school when you’d give anything to keep them home because you want
to be there for them when they are having bad days, but you know that you have 3-4
doctors’ appointments coming in the next few weeks, so you don’t feel like you
can tell your boss that you’re staying home. Lately, I have had this pulling at
my heart because my desire to want to work and be in an office has become less
of what I want for my life. I love my job and I love the work, but I love my
kids more. If I were to quite my job tomorrow and in 10 years Skylar was no longer
here I’d never look back and say that I wish I would have worked more and spent
less time with her, but I feel like in those 10 years I could look back and say
I wish I would have spent more time with her rather than being at my job. That’s
easier said than done though. I don’t have the luxury of quitting my job and
just deciding I’m going to stay home. I
haven’t been able to find something to allow me to do that or allow me to work
from home so, as of right now, that’s not God’s plan for my life. Regardless of
whatever field you work in, you’ll never have a boss that understands what it’s
like unless they have walked in the same shoes as you.
Some things that people also don’t understand is that as a special
needs mom you miss out on a lot and it’s lonely. We’ve cancelled plans and
trips and many things due to hospital stays or just not feeling well or having
a temperature too low. Your plans are always in pencil because you truly never
know what kind of day they might have when you wake up one morning and just
because their morning started out amazing doesn’t mean it will end that way.
You have a lot of people that care and love you and your family, but close
friendships are hard. They truly don’t’ understand your life and how complicated
it is. I have friends and people that really care about my family and care
about me, but I’ve had girl’s nights with my church group, but I truly don’t have
a group of girl friends that I can call up to go do things with. I have spent most
of my adult life focused on my child and that didn’t leave much for friends and
time for myself. There is a lot of support and families like to get together and
talk about issues and things going on in our life and it’s amazing. I love
those times and I love being able to share those moments with people that
understand. One thing that I told Hospice when Skylar was it was there are a
lot of support groups for parents who have lost children but there is not one
for parents with terminal children. I never want to spend my days focusing on
the negative but sometimes it would nice to reach out to family and say I’m
having a really hard day and they know exactly why and what I’m going through.
I do commend special needs parents and what they go through
and what they must learn and teach themselves. It is certainly not easy. It’s
like owning a care. I know the basics of how to keep my car running. I know to
change the oil and put gas it in but when something goes wrong I have no clue. Parents
of healthy children are checking for oil changes and if they need gas, but parents
of special needs children are having to know what it all means when the car breaks
down, what to look for when things start to go wrong and doing everything we
know how to keep the car running as smoothly as possible. It’s way beyond oil
changes and gas it’s checking under the hood and checking all aspects of the car
24/7 and the slightest glitch can set so many things off. So, mommas I see you
and I’m so thankful that you chose to be the mom that you are the dad that you
are and chose to give these kids an amazing life. They truly deserve everything
the world has to offer and not everyone is willing to do what is necessary to
ensure that happens.
