Today I am sharing Kara's story of what it is like to parent when you are living with physical challenges. I asked her a bunch of questions and she is sharing her answers with us. Please read on and leave her a friendly comment at the end!
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My name is Kara. I got married 7 1/2 years ago in August 2007 to a
wonderful, supportive, helpful man named Tim who I had started dating in
grade 9. I became a stay at home mom in November 2012 when my daughter
Kailyn was born. She surprised us all by coming 3 months early at 28
weeks, weighing 1.4 lbs. Her strength was truly a miracle and we spent
10 weeks in the hospital without any major issues.
I
was diagnosed with scleroderma in 2000 when I was in grade 7. It's an
auto immune disease that affects the skin tissue and internal organs.
It's involvement for me up to this point has been mostly tightening of
the skin in my hands and face, Raynaud's (which is poor circulation),
which has caused ulcers and bone loss on the fingertips, slightly lower
lung capacity, and tightening of the esophagus.
In
a normal week I'm involved at our church two mornings (bible study and
moms group), one date day and the other two weekdays spent at home or
doing other errands/appointments. We always will be home after lunch for
nap time!
My disability definitely affects me
every day in many ways, but often is ways that I have adapted and don't
notice as much. The biggest difficult is my ulcers, especially if they
are bad or become infected. Last winter one had gotten infected twice
(had to go on antibiotics). At this time it was so painful and difficult
to do things, that when my daughter pooped I would call my mom and she
would come change her diaper because I was unable to. This is the
extreme and has only happened that one time so far. My biggest daily
challenge would be energy. I do fear the day that she won't take naps as
I have napped almost daily since high school. Also, the baby stage and
doing all the difficult buckles and clothing snaps were very hard. It's
gotten easier as she has gotten older. I'd say that my biggest advantage
of having this disease is that I've needed help with things for a long
time so I lost my pride and need to be "super woman" and do everything
myself a while ago. I am very comfortable asking the people around me
for help.
I wouldn't say that I doubted my
ability to parent, but I knew it would have it's challenges. For me it
was more of a question of getting pregnant, and the effects on my body
for carrying the baby and delivery.
The
disease has shaped our relationship, since my husband has been on this
journey with me since basically the beginning. He went into our marriage
knowing that it's what I had and like most (if not all) auto immune
diseases it's progressive and you don't know how it will continue to
affect you. We have found the balance of what I can do and what is his
responsibility. It works :)
I'm not sure how my
disease has affected my daughter so far because she just turned two.
But I hope it will teach her that life can hand you many different unwanted circumstances, but you can choose to be positive and look for the many good things.
We
are Christians and our hope is in our eternal life where there will be
no illness and pain. This is what we look to for comfort. This disease
is a reminder that this earth isn't our final home.
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Click here to read my reasons for doing this series.
