OK, I have to admit that I do not in any way, shape or form think of myself as "wise".
I am under no illusion that I am a great sage or philosopher of the times. However
I feel compelled to write this page because the #1 question that I am asked
by parents who are just starting their journey is
always, "How do you cope with all of this?". I am certain that I don't have THE
answer and that everyone will find their own answer eventually, but below is
my answer.
My answer comes in two parts. The first is that while everyone says that
they would do anything for their child, you will find out after this one is born
just how powerful those words really are. If you had asked me a year before my son
was born if I could put a tube down a kid's throat and into their stomach while making
sure that I didn't puncture a lung I would have told you "No way!". And yet I did it
because it meant that my precious little boy would get the nutrition he needed even
if he couldn't quite get enough from the bottle that day. I knew it would make it that
much sooner that he would come home. I knew that he needed it and yes, and I found out
that in fact it turns out that you will do ANYTHING for your child.
As time goes on you will become
more confident in your own knowledge, you will understand all the words that
the doctor uses in your appointments. Your child will grow stronger and less
fragile, and you will get to know them well enough that you will know instinctively
if something is not right.
The second part will show in absolute terms just how much of a geek I am, and yet I
have learned to accept wisdom no matter where it comes from. Now I am not much of a TV
person, the satellite dish was destroyed by a branch in a storm a few weeks ago and it
took me two days to notice. But back in the early 90's there was a TV sci-fi series
called Babylon 5 and being a complete geek I, of course, watched every episode. And it
being a sci-fi series it was populated with all manner of aliens that learned how to co-exist
despite their differences. The actual plot is not important, but there
was a race of aliens that had a strongly religious sect and their mantra was: "Faith Manages".
This belief helped them get through when they were asked to do more than they thought
they were capable of.
The series went off the air more than 10 years ago and I hadn't given it much thought
since then. One day though, while I was trying to get through one of those days
where it just seemed that too much was being asked of me as a Mom, I remembered those
words and I realized just how potent they were.
This website is non-denominational, everyone is welcome no matter what their beliefs are.
But there is no denying that there is a spiritual side to coping with
caring for a child that has a life-long medical condition. So no matter what Faith you
have, you must have Faith that you will Manage.
So that is all the wisdom that I have to offer. I'm not a terribly deep person and I
certainly don't believe that I have all the answers, but this is what gets me through the
day. I will close with a poem that I wrote a few years ago for a friend that was pregnant
with her first child and was nervous about being a mother and having the perfect
"birth plan" and all the other pressures that people have put on the
"birth experience" these days. Now that I have been through a much less than
picture perfect "birth experience" I think it applies even more. I hope that all of this has
helped.
What Mothers Need to Know
Nine months to wait to hear your cries,
Nine months to wait to see your eyes.
Nine months to learn what I must know
To help you gain strength and grow.
Nine hours of labor goes by so fast,
And finally I hold you at long last.
Maybe the birth wasn’t quite what I planned,
But it matters not as I hold your hand.
Now I have learned what I must know,
That it will be easy to help you grow.
The love I felt when I saw your eyes
Is all that I need to make me wise.
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