Briefly describe your life and what you think makes it unique.
I'm
a married, work out of the house mom with one awesome 8 year old
daughter, Maya. I always want to say that I'm just your "typical" work
out of the house mom. But, the truth is I'm not typical. I have a
progressive, degenerative neuromuscular disease called Charcot Marie
Tooth Disease (CMT). Most people have never heard of it (in spite of the
fact that it is actually the most common inherited neurological
disease) but the bottom line is that my nerves are dysfunctional and
thus messages from my brain can't get to my muscles. As a result, I
have significant muscle wasting. It makes everyday things like walking,
climbing stairs, opening bottles etc. much more challenging for me. It
is an inherited disorder, so I've had it my whole life. It is
progressive and does get worse as I get older. On top of CMT I have
been plagued with various orthopedic problems and other minor health
conditions like obstructive sleep apnea and hypothyroidism. I've had 5
orthopedic surgeries since 2001. I have arthritis in my knees hips and
shoulders. In many ways, my life is very similar to many other working
parents with decent professional jobs. I work a normal 40 hour week
with occasional overtime, my daughter does after school activities, have
to keep up with housework, yadda, yadda, yadda. I just have added
physical impairments which make trying to live a "normal" 35 year old
person's life more exhausting, painful, and challenging.
What are some of your favorite tips and strategies for coping with the chaos?
Please share a moment where it all broke down, and how you got through it.
I find it hard to pinpoint a "moment." I am pretty good at coping in the moment, but cumulative stress and exhaustion really takes a toll. I suspect I'm not alone. Usually, the point where I lose my ever loving mind is not about whatever is going on in that moment. It is a cumulative effect of small pressures building until finally, I reach a boiling point. At that point, get out of the way because it is likely there will be collateral damage.
For example,
this spring and summer were extremely challenging. I had been having
problems with my right shoulder for about a year. In January of 2013 I
finally started going to the doctor to get relief. I tried rest,
physical therapy, I went round and round with the orthopedic surgeon and
finally in April, I got an MRI. It looked like my rotator cuff was
torn and I elected to have surgery. This was done in late May. Did I
mention that my job had just moved locations and we were in the
beginning of a huge project to restructure the way we do business?
Also, my husband and I planned on moving in the summer of 2013 because
of the office location move, searching for a better commute and better
schools, etc. We had to find a new place, pack up the old one, move,
unpack, etc. We didn't have the luxury of hiring packers and movers.
We planned to do it all ourselves.
So, I
scheduled the surgery for the end of May, tentatively planned the move
for sometime in August hoping I would be recovered enough to at least be
able to pack and unpack boxes. I worked my tail off at work trying to
get as much done and in good shape because I had been told I would be
out of work for 6 weeks. The surgery was uneventful (which is a very
good thing. I once had a severe reaction to anesthesia that almost
killed me, so anytime I have surgery I get nervous). Turns out the
rotator cuff was not actually torn, just some impingement and damaged
tendon tissues. I had my follow up with the surgeon and he said I could
go back to work with restrictions after just 10 days from surgery. So,
I went back to work. I was exhausted. The night after my first full 8
hour day I tripped and twisted my foot. My husband was away on a
business trip. I managed to get my daughter off to school the following
morning with the help of a friend and got myself in for an x-ray. Not
broken! Yay! Just a severe sprain! So, I kept working.
Meanwhile,
at work, I had been selected for a pilot team to test a bunch of new
ways of doing business, one of which was the development of a brand new
role. I was told I would be testing out this new role (which was not
yet defined). It was a great opportunity for me. The kind of
opportunity which may not lead to immediate promotion, but certainly had
potential for me to impress people.
So, in spite of the chaos of my physical issues and attempting to find a place to live, pack the house and do all the moving transitions, I approached the challenge with enthusiasm, a sense of humor and gave it my all. I put in extra hours, undergoing enormous change and stress to try to create a new role and make it successful. Based on the feedback I received at work, it seemed like I was doing well.
So, in spite of the chaos of my physical issues and attempting to find a place to live, pack the house and do all the moving transitions, I approached the challenge with enthusiasm, a sense of humor and gave it my all. I put in extra hours, undergoing enormous change and stress to try to create a new role and make it successful. Based on the feedback I received at work, it seemed like I was doing well.
In the midst of all
this, we have to clean and pack the house. At one point, I was helping
my daughter get her room organized. It was an absolute pig sty. There
were toys everywhere, clothing everywhere, you could barely walk through
the room. She is 8, I was still recovering from the shoulder surgery
and sprained foot. I was tired, in pain, crabby and really really
stressed out. She and I were in there, and like any typical 8 year old
kid she was "cleaning" but getting distracted by every toy she came
across and, ahem, not moving very fast. As in, a sloth changing
positions to find its next prime napping spot would probably have moved
faster. I lost.my.mind. I started throwing all of her toys into a pile
so I could clear a path to walk. I'm yelling things like, "if you
can't be bothered to take care of your things, then you will have no
more things, I will simply throw everything away." My little hoarder
starts sobbing and screaming because I'm throwing her toys and honestly,
I probably scared her a little because at that point, Rational Mommy
who understands what can reasonably be expected from an 8 year old and
how to communicate with said 8 year old had left the building. Dragon
Mom with eyes that shoot daggers and steam coming out of her ears and
fire from her mouth had taken over. We went on like that for a good ten
minutes. Screaming, shouting, crying, oh my! I finally had to leave
the room and physically and metaphorically cool off. I went downstairs.
I had a glass of water. My husband is all "what the heck is going
on?" we talk. I calm down, cool off and head back up the stairs to her
room. Like I said, I wasn't very proud of how I behaved.
Once
I got upstairs, we sat down on her bed and I apologized. I told her
that I was sorry I yelled and that even though I was really upset, and
had good reason to be upset, it wasn't ok for me to yell at her like
that. I explained that while it was ok for me to feel frustrated that
she wasn't taking cleaning seriously, that she had allowed it get to the
point it was in, and that she was not treating her things with respect,
how I dealt with that frustration was inappropriate. We talked about
other strategies I could have used (i.e. i should have left the room a
lot sooner than I did). We talked about why keeping her room neat on a
regular basis is important, etc. I again apologized sincerely, hugs and
kisses were had and then we continued to clean her room with no further
incident.
Although I still cringe whenever
Dragon Mom makes an appearance, I can thankfully say it doesn't happen
all that often. Though I don't like it, I do think it is important for
our kids to see that parents aren't perfect. Also, they learn a lot
from watching what we do in those moments. The truth is, we all make
mistakes. I believe the true measure of your character is how you
handle yourself after you've screwed up.
Regardless,
had all the other stress I was under at the time-recovering from injury
and surgery, work stress, and moving stress not been smoldering, it is
unlikely Dragon Mom would have made an appearance over something so
minor as a messy room. But, that is how it happens. Again, not very
proud of myself, but eventually, I reach a point where I just can't take
any more and something small and stupid will just make me come unglued.
I think everyone has a boiling point. I'm trying to learn from that
though and keep things from getting too overwhelming again.
Do you have any balance role models?
Anything you try to avoid because it wouldn't work for you?
I
can't think of any specific balance role models. I do try to learn
from my mother. Sadly, she passed away when I was pregnant with Maya,
but she was such an incredible mother. I miss her everyday. She was
not perfect, and I try to learn from her "mistakes" as much as her
successes.
I still marvel at all she managed to
accomplish with 4 daughters to raise. One lesson I've learned from her
is to get my priorities right. Her house (and now mine) was never spic
and span perfect. It was lived in, could almost always benefit from a
thorough dusting, or mopping of the floors, but we had plenty of time
with her. She spent time making things for us (she was an extremely
talented seamstress), helped with homework, always encouraged us, etc.
At this point, I recognize that I can't do it all. I don't have the
physical stamina to work all day and keep up with the amount of
housework necessary to have a spotless house. I'm not saying I live in a
pig sty or anything, but my house could use a good dusting. The floors
need to be mopped, etc. However, it is just not a major priority. I
would rather spend quality time with my daughter after work than mop the
floors. I've accepted certain limitations and try to focus my energies
where I need them, my family and my job.
Think back to your 18th birthday. How is your life different from how you expected it to be then?
In
many ways, I'm living a life I barely dared to hope to have. I think I
assumed I would make more money and be more financially "ahead," but I
had lead a relatively sheltered upper middle class life, so most of that
was just naivety. Plus, the economy bottomed out and I think most of
us are not where we thought we would be. But, beyond that, I knew I
would want to be married with children and working out of the house.
Ironically enough, I never questioned that I would be a "working mom."
I just assumed I would never be happy as a stay-at-home mom. Of
course, once motherhood actually arrived there have been numerous times
where I have wished I could be a stay-at-home mom. Even now, with just
one school aged child I would very much prefer to work part time (25-30
hours per week would be ideal for me), but that is mostly a function of
the advancement of CMT and less about motherhood per se. I don't have
the stamina to work full time and give what I want to my family and take
care of myself as much as I should. But, like many other families out
there, me staying home, or even working part time is not feasible for
us. I do like my job, and I think I personally need to have some focus
outside my family to feel like the best me (my 18 year old self got that
much right), I just wish I could do it for fewer hours of the week.
As
much as I hoped this would be my life, I didn't actually believe it
would happen. I got the message very clearly from my father growing up
that because I was "damaged goods" it was unlikely any man would want
me, and that if I did miraculously manage to snare a man, I should
definitely not have children for fear of passing on this "dreaded
disease" (there's a 50/50 chance with each pregnancy of passing on CMT)
That, coupled with my awkwardness with boys in high school had me
convinced I was basically untouchable. I never believed I was totally
worthless (thanks in large part to my mother), but I definitely spent
the better part of my adolescence and young adulthood feeling
undesirable and unwanted. Thankfully, I managed to develop some self
confidence in college and graduate school. When my husband and I
started dating I really believed for the first time that the "happily
ever after" I always wanted was possible. It is not always sunshine and
roses around here, but truthfully the reality of my marriage and family
life are far better than I ever could have believed possible.
Relate to what Kate is saying? Leave her some love in the comments. Read other posts from The Having It All Project here. Want to participate? Send me an email at havingitallproject@gmail.com.
photo credit: mrp photography
Relate to what Kate is saying? Leave her some love in the comments. Read other posts from The Having It All Project here. Want to participate? Send me an email at havingitallproject@gmail.com.
photo credit: mrp photography