SINGLE
PARENTING WITH PH
By
Bailey Rains
Way back when I was
in high school, I knew even then that I wanted to have children. Being
the youngest child in my family, I didn't have much exposure to younger
kids, but that didn't stop the desire. I even had my daughter's name already
picked out. I've been blessed to have both this daughter and a son. They
are both healthy and happy and are wonderful people. While my daughter
is an adult now and off at college, my son still has a way to go.
Mother love is fierce.
While marital love is conditional, and in my case, faded away to nothing,
mother love is forever. It is simply my essence. Yes, I have had a full
rewarding life, but my kids have always come first. When one of them is
hurt, sick, picked on, or otherwise slighted by life, I switch into what
they both laughingly call "Mamabear Mode". Mamabear has taken
on quite a few battles over the years, and I'm proud to say, we've all
survived beautifully.
That is, until now.
In an effort to become slimmer and healthier, I asked my doctor to help
me lose weight. The rest of the story is known to many of us PHers. Now
Mamabear might not be around to help them with their battles and celebrate
their successes. Mamabear has Pulmonary Hypertension.
My situation is difficult
for me, as I am now a single parent. The decisions I've had to make and
all aspects of my care are in my hands alone. After my diagnosis of PH,
it was 8 months before I told my children about my disease. I had to -
I was in cardiac failure, and had to be admitted to the hospital to be
started on Flolan. Since then, my doctors have encouraged me to be open
and share information with my children about my PH, but it has been hard.
Our natural inclination as parents is to shield our children from events
or happenings that might hurt them. After a period of shock, disbelief,
and grief, it has become part of all of our lives. I do the mixing of
my Flolan cassettes, site cleanings, supply organization, etc., and they
have accepted it as a part of who I am. They know that before we leave
the house, someone has to get the 'purple pack' that is packed with supplies
and my spare cassette.
My biggest stumbling
block with my children has been "What do I tell them?", "How
much?", "When?" I received a lot of guidance from a book
titled "How to Help Children Through a Parent's Serious Illness",
by Kathleen McCue, M.A., C.C.L.S. It has helped me decide the answers
to these questions, and others that I hadn't thought of. I sat down with
both my children (separately), and simply asked them "What do you
want to know?" The book suggested telling them what they want to
know, being as honest as you can. Don't volunteer information that they
haven't asked for. They will ask the harder questions when they feel emotionally
ready to know the answers. I've made it clear to my children that they
can ask me anything anytime. Sometimes questions still pop up out of the
blue, like during a car trip, but for the most part they are satisfied
and have accepted the situation. Of course, there will always be questions
that I can't answer, as there is still so much developing about the treatment
of this disease.
I have raised and
nurtured my children to the best of my ability, and for 21 years it has
fulfilled me. Now their love and support help sustain me. They give me
reasons to keep fighting. I still keep goals of seeing high school and
college graduations, knowing my grandchildren, and seeing what marvelous
people my kids turn out to be. With the grace of God and a lot of luck,
I'll reach my goals.
July 1, 2002
"How
to Help Children Through a Parent's Serious Illness"
is available through our Books page in the PHC Store, in association
with Amazon.com.
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