Hey everyone,
It’s been a while. Ive had so many ideas lately what things
I want to share but haven’t had the time to actually sit down and write.
I want to tell you about our trip earlier this year. We were
invited to a friends wedding in Florida. We took this opportunity to visit
family and turn our wedding invitation into a mini vacation. Like any other
mother I wanted to make sure my girls would have everything that they would
need. Because of Jasmine’s condition, I always pack her medical supplies bag
first. That way my head is clear unlike when I get to my own bag I’m throwing
whatever comes out of the drawers and stuffing god knows what right in because
by that point I’m exhausted and I want to sleep before we leave at the crack of
dawn. I don’t know about you but this is ALWAYS how it happens at our house.
Anyways, the medical bag goes first. For days and sometimes
weeks before we leave for a trip I call all of her suppliers and make sure that
we will have what we need delivered before we leave. Sounds straight forward,
but sometimes it turns into a lot of calls before hand. Of course I always over
pack her supplies because you never know what could happen and when your
traveling you cannot just stop into the local gas station and buy g-tube
extensions or specialty medication that gets overnighted from California.
Other than the medical bag the rest of the packing is just
as it is with any normal family. I pack the girls a bag with a million diapers
and socks and as many outfits as I can find. I move on to washing all of my
dirty clothes last minute because everything is always last minute when we are
getting ready to leave.
There is something that we didn’t know we needed to prepare
for.
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| Jasmine |
I’ve been explaining this process to my family and friends
for the last year. I’ve been trying to tell them what happens and how scary it
is, but apparently its one of those things you have to see for yourself. We
went to the nearest capable children’s hospital and learned very quickly that
Jasmines condition is in fact very rare. The nurses were “googling” her
condition before entering our room. It was the biggest eye opener. We didn’t know
what kind of serious preparation needed to go into traveling with a chronically
ill child. This trip turned into a learning experience not only for us but as a
truly eye opening experience for my mom. Not that she didn’t understand when I told
her Jasmine’s condition can be serious but finally she had witnessed the very terrifying
experience of seeing it first hand. I think we all take things a little more
seriously now.
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| Jasmine showing off her cool bracelet |
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| Rare sight- Jasmine eating after getting fluids |
