I always get Gav's enzymes together before his bottle because if he gets a look at his bottle and doesn't get it right away...game over.
For those of you who can just plop a bottle in your child's mouth, or sit them down for a meal without having to consider how many calories you think they might consume
...apparently it's fun to be really hungry when I make a small bowl of food and to get full fast if I make a large bowl...
and have to weigh out how many enzymes you think they should take so they don't get too few...resulting in a bad tummy ache & an explosive diaper...or too many...
Consider yourself lucky.
Now, I'm not complaining. OK, maybe a little bit, but most of the time I consider myself to be very lucky to be living in a time where we have such awesome medications helping us to control his GI and other issues...but every now and then I realize that this wasn't what was supposed to happen.
See... Gav has been a surprise from the moment we found out about him. I wasn't supposed to be able to get pregnant without some medical help (aka fertility drugs) due to past
and botched
medical procedures. I was also on "the pill." And we weren't anywhere near a point in planning for a baby...or getting married for that matter! So needless to say...
we weren't prepared.
Then Gavin decided to arrive a week early...
we weren't mentally prepared.
And at five days old, we got his CF diagnosis...
we weren't mentally, physically or emotionally prepared.
But luckily, we were spiritually prepared. Both Gavin's arrival and his diagnosis reminded us that we have no control over our future, or how long we are granted time here on earth.
Those plans are not in our hands.
Becoming aware of Gav's medical condition was a slap in the face.
WAKE UP! GROW UP! YOU DON'T GET TO MAKE ALL THE PLANS!
But it was a slap in the face we both needed. I believe that both of us grew up and matured faster in that one day than we had in our entire lives.
And as hard as I try to wrap my brain around the fact that my child has this horrible and disgusting disease. And I try to prepare myself emotionally, physically and mentally for what our future of fighting this disease may bring...I have to remind myself that being spiritually prepared is all we really need.
Oh, and just in case you were wondering how fast you are driving...come drive by our place.
This...
is in our front yard.
I totally know what you mean. I don't have to count calories or anything, but having a child with Autism means having to hold hands (or carry) a 50 pound 6 yr old everywhere. He doesn't get the concept of safety, and will take off anywhere.
ReplyDeleteI won't bore you with details ;-) but just know that the road you were supposed to be on is more common than you think. I'm here if you need to talk. Have you read the poem Welcome to Holland?
I know it's not exactly the same anymore, but I've been there - I often thought the same things when I'd have to plan how many oxygen tanks or tubes we needed before we went anywhere - or the times when I couldn't just do what was normal and grab her up and walk wherever. it sucks. praying that some day soon there will be a lovely cure so you won't have to think twice about it. just curious...can you give him the enzymes right after he eats (i.e. after you know how much he ate?) or does it have to be before?
ReplyDeleteI so get where you are coming from in this! Sydney is 6 now (dx 5 years ago) so at this point, enzymes are pretty much second nature. I don't even use much of my brain when it comes to remembering them or dosing, it just happens automatically. But every once in awhile I mess up and get slapped in the face with the reality of them, such as when we are at a restraunt and somehow have forgotten to bring them or when I accidently give them to MYSELF, lol! I also realized just how "lucky" most people are when our second child was born w/o cf, feeding him without enzymes feels so much easier! However, like you I try to focus on how fortunate we are that our kids have such great medications available these days and that the meds are only going to keep getting better until there is a CURE!
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