While on a search for coloring sheets which include differently abled children I discovered Capable Kids Clubhouse. The site is produced by Easy Stand which happens to be the company which created on of Maddie's favorite things--her stander. I think she would spend all day in hers if she was allowed to.
However, the site is much more than a sale spot. It has awesome coloring sheets which include a diversity of children (YEAH!), a variety of articles of interest to caregivers of medically fragile children, games and songs for kids. It is worth taking a few minutes to check it out at http://blog.easystand.com/capable-kids/.
Sunday, July 29, 2012
Thursday, July 26, 2012
"Don't Forget..."
Being a parent is not an easy job! Parenting is demanding
physically, emotionally, socially, and financially. It is a huge responsibility…all the time! When parenting a medically fragile child
things get way more complicated. Add
more worry, guilt, and responsibilities and huge consequences for errors to the
load. Add doctors, social workers,
nurses, and my favorite schedulers who all think their priorities should be my
priority. Ahhhh!
In the face of great stress other people can be so
helpful! “Don’t forget to take care of
yourself!” Such words are often uttered
when my child is critically ill in the hospital, I am facing a writing deadline
that will determine whether I can pay the rent for the next three months, and I
have a college student who is complaining about a paper that is not yet
graded. “Don’t forget to take care of
yourself!” There have been many times when I have wanted to yell in return, “Just
how am I supposed to do that?”
I confess I started a list of things that would calm me down
especially for stress in confinement, like an emergency room. A cold drink, crunchy food, a trash novel, a Sudoku
puzzle, and my child…okay so they were actually the tools I needed to sit still
for the long hours of worry and waiting.
I had another list for actual hospital stays (I never leave Maddie for
long). Here are some of the things I
have found helpful.
v
I have to remind myself to eat and sleep
regularly. If I don’t, I am easily
overwhelmed and cranky. The “to do list”
in my head just has to wait for me to do those two things or even the simplest of
tasks takes more time and energy than I can give.
v
I need to maintain relationships with friends
who have a calming and strengthening affect on me. When I am stressed, I avoid people who like
drama or have a need to “fix” me.
v
I have adopted serenity spaces to take a short
break. For me the most effective spaces
involve trees and outdoors (even when the snow is blowing). I had to establish firm boundaries with the
other people in my world about giving me time alone in those spaces.
v
I remember my grandparents raised children with
far less money, space, options, and without a dishwasher! They bring me strength and courage and gratitude
for living in this time with my child instead of decades past.
v
If I am looking at a long hospital stay, I do
what I would at home. I once created
four huge backdrops for a children’s event host by a couple of museums, sitting
right next to Maddie. I have sewn
clothes and props by hauling my sewing machine to Maddie’s hospital room. I have written countless English lessons and
graded a multitude of papers. The work
and the routine are important for my mental health as well as our financial well-being.
v
And every day, no matter what is going on, I get to take at least 15 minutes
to do just what I want to do. It might
be dancing to a song that makes me happy, reading a junk novel, painting something
silly, or taking a very hot bath and fantasying I’m on a cruise ship heading
for Alaska.
As frustrating as it is to hear, “Don’t forget to take care
of yourself,” it is important to figure out how to do that. I am so aware that taking care of myself
looks different than taking care of anyone else! Once I knew what worked for me, handling
whatever comes my way much easier.
Saturday, July 7, 2012
Flexing in the Heat and Other Times
It is way too hot outside!
The heat is so frustrating! At a
level hanging around a 100 degrees and above for days on end is plain nasty. Among many things I would like to do outside, I have a table and
two dressers I’m anxious to be painting but they have to be sanded first. Before I would have spent a whole lot of time being frustrated at the situation. Now I just put outside work on
hold and invest the time on other
projects. It really
isn’t that big of a deal. I just flex
with the weather…and anything else that comes up.
One of the gifts that
comes from being the parent of a medically fragile child is flexibility. All children reorder priorities, time,
energy, and resources. A medically
fragile child tends to reorder things every day. Sometimes it is frustrating, disappointing
and lonely. A single dad of a
complicated little boy in Indiana said to me, “I love my son more than I
thought was possible but it is like being on house arrest.” He’s right.
When you have a medically fragile child, the well being of
the child comes first. It means not
going anywhere just because you take a notion to. It means not going places when the weather is
too hot or too cold. It means staying
home when the child does not feel well.
It means dropping whatever plans you have when another caregiver is not
available or a nurse calls in sick. It
means rearranging work and vacation schedules to work in doctor’s appointments
or a hospital stay. All of that can
leave parents feeling isolated and alone.
Which, of course, means that we have to be very intentional
about some things. I have found that I
have to remember to call my friends just to keep in touch and to be the friend
I have always been. I may not be able to
go out for lunch or catch an art show the way I used to but I can still talk,
laugh, and share life with them. I
couldn’t get through most things without the love and support of my friends and
family but in order to have them I have to be there even if it is just by
phone.
Over the years I have learned to always have a plan B. I think it was after I had to cancel date
number two with a guy I was interested in that the disappointment nearly
overwhelmed me. After a major pity party
with me as the only guest, I realized this was part of my life now. I could either be miserable or I could learn
to cope with the sudden plan changes that frequently occurred because of
Maddie’s medical needs. I learned the
plan B method. Always have something I
can do and be happy doing ready at any moment.
It doesn’t have to be big. Often
it is a new book I am looking forward to reading, a DVD movie I haven’t seen,
or a special project. Usually just
having that and loving to spend time with Maddie was enough to make up for
whatever did not happen.
I, also keep a running list of things that I would like to
do at home. Not chores! Fun things!
That is really how I ended up being an artist. I wanted to make handmade paper so a friend
taught me. Soon I was making bunches of
the stuff and moved on to finding ways to use it. That was followed by searching the public
library for art and craft books. I
continue the practice even today. At the
moment there have be at least ten projects I want to try. Thankfully I am usually able to find a market
for my work so it also is income producing.
But that is not how it started. I
started doing art because I was not able to go the places I normally would and
do the things I enjoyed. Art was my plan
B. Plan B days became like prized snow
days, only I didn’t have to shovel us out!
Early on, I sought out support groups face to face and on
line. In the end, they were not as
helpful to me as they might be to others.
For one thing, very few parents seemed to be dealing with a child with
as complex issues as Maddie had. At that
time the disability of the day was Down’s Syndrome (much like autism is
today). The issues I was trying to deal
with were so much more complicated and the future so much more uncertain. I
tried a couple of face to face groups. I
soon discovered the childcare available for the groups did not include feeding
tubes, seizures and other issues Maddie had. In addition, the evening meeting times
conflicted with Maddie’s evening treatments and bedtime. There may be other options available that I am
not aware of. I think there are now different
online supports that maybe available (I will be doing some research and will
post them as I find them). It would be
worth taking the time to try to find some other parents raising medically
fragile children.
Having said that, I feel a need to give a word of
warning. These parents will be just as
diverse as the general population. Some
will seem amazing in what they are doing and how they parent their child or
children. Learn from those. Others may
be struggling to survive and have difficulties that seem overwhelming. Coping skills of some include a lot of drama,
rage, and various addictions. Even
though a desire to help maybe the first thought, it is important to maintain
boundaries. Parents of medically fragile
children have more than enough issues to deal with without taking on the needs
people in unhealthy situations.
Having a medically fragile child does not have to be a
lonely frustrating experience! It takes
knowing yourself, maintaining friendships, and finding interests you can pursue
with the resources you have. It would be
nice to find someone who is in a similar situation but that may not be as easy
as it sounds.
If you have found ways to help you or your family, I and the
other readers would love to read your comments.
Sunday, July 1, 2012
The Power of an Image!!
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