I like to think through the list of the day's accomplishments when I'm settling down to sleep. Generally, I edit out the negative accomplishments like over spending on groceries or having to go back to the gym twice to look for the sneaker that the 8 yo inexplicably lost while wearing and didn't mention until his barefoot status was questioned as we were driving home. Not that either of those two things have ever happened... My mental accomplishment list then turns to thanks and prayer to God. It's a magnificent way to go to sleep- especially on nights when I don't pass out within seconds.
Thanksgiving Holiday seems to require a bonus thanks, more of a list. I started thinking about our 2 youngest children and their genetic metabolic disorder called FOD. I will never, never be thankful for FOD. I just won't. I don't want them to have it, I don't want anyone anywhere to have to suffer with it. I think my churlishness correct. However, I do have to admit that some of the ways FOD has changed me as a mother and a person have been positive. I guess in a self-centered way I can be thankful for some of the changes I've experienced. Here goes-
Our life before FOD, when I knew:
Since FOD I've learned:
- Breast was always best.
- Healthy food + Activity= Healthy children
- Strollers were for babies or lazy parents.
- Chronically ill people look chronically ill.
- Olive oil and raw butter are health foods.
- Cornstarch was for pies.
- I could find our pediatricians phone number- somewhere.
- Vitamins and supplements merely produce expensive urine.
- My husband and I had "good" genes.
- Nighttime was for sleep.
- Glucometers were for diabetics.
- I trusted God.
I was an experienced, opinionated and fairly rigid mother of five children.
- How a person feeds their baby is not anyone else's business.
- Healthy foods + Activity + Medical Care can = Healthy Children
- Strollers are for babies and floppy, clumsy days, and many things that are not anyone else's business.
- The term "invisible disability" is now in my consciousness.
- Olive oil and butter are only healthy if you can metabolize long chain fats.
- Cornstarch is for pies and for Life. God bless Argo.
- My children's pediatrician and geneticist's numbers are on speed dial.
- Vitamins and supplements make very expensive urine and a sweet smelling active toddler.
- My husband and I are carriers.
- Nighttime is for sleep and pajama-clad caregiving.
- Glucometers can be for FODs.
- I'm learning to trust God.
I'm now an often sleepy mother of 7, still experienced, just much less opinionated and hopefully more compassionate.
If you are interested in learning more about Fatty Acid Oxidation Disorder visit Fod Family Support. The site is a nonprofit organization that helps many, many families (including ours) both cope with their children's diagnosis and cope with helping their children thrive.
Posts
6 comments:
I have a friend whose baby has FOD too. I wonder if more and more people are being born with this disorder these days? Your post is really informative and I think its great that you can still find the humor in everything. I'm going to pass your blog along to my friend. You are a strong woman and a wonderful mother! I am following your blog now.
organicmotherhoodwithcoolwhip.com
Naomi,
Thanks for your kind words:)
If you friend doesn't already know about the gmail list at Fod support she might want to look into it.
I don't know if more babies are being born with FOD yet, but I do know that many if not most of those babies would have died and been labeled SIDS had they been born 15-20 years ago.
Very good! Learning to trust God, over and over, sometimes every day, sometimes by the minute.
I love reading what you write. Either you are really in my head, or we are both raising FODers! :)
Isn't it funny how we change over the years? Great post!!
Have a Happy Thanksgiving!
So, so true! And I'm sure we could all come up with our own lists.
I hope you and yours have a wonderful Thanksgiving holiday!
Having a mummy moment & " things I thought I knew" is really right for today, thanks Susan, biggest hugs, I have already updated my speed dial.
Carolyn
Post a Comment