Sunday, February 17, 2013

Feed the Brain and Hope for the Future

Hang on tight while you read this post.  I have some ideas that have been spinning in my head and I am just going to let them fly.  Not exactly sure what's gonna come out.

Truth is, raising kids is a daily challenge.  They are all different in their personalities, talents and needs.  Some are noisy and some quiet.  Some active and busy, others relaxed and just taking it all in.  For some school/book learning is a breeze and others must work hard.  Some are athletic and some artistic.  Some want you to do things for them and some are born declaring their independence. Some feel all things deeply and others must be constantly reminded not to bulldoze over their friends.  Some live for structure and others suffocate with too much structure.

I guess all that to say there is no magic formula or single parenting trend to assure you are, "doing it right."  More like a constant monitor and adjust from a myriad of approaches all covered in unconditional love.

So far so good with our first 3 so called, 'typical' children.  (as if there is a standard that declares typical).  They are unique and our parenting has been the same but very different in raising all of them.   The same in that we want the same for all of them - to know and love God, to discover their talents and develop them, to know right from wrong and make the right choices, to dream big and be capable of making those dreams come true.  Different in how each of them learn, in the amount of help they need along the way, in the way they need to be disciplined...

Now with Ayden Jane I would have to say that our parenting is still the same in what we hope and expect for her.  How to get there is, however, much more complicated!

At diagnosis we were told by our geneticist what her future would hold.  Let's just say it wasn't pretty.  Our first Endo told me outright that I needed to accept that Ayden Jane was not like other kids and to stop expecting so much from her.  That is the short version!

Obviously I have trouble with my listening skills.  I looked at AJ, even at her tiny little age of nearing 1 when all of this happened and I just knew there was so much more inside her than they kept telling me.  I was not yet ready to give up my hopes, dreams and expectations for her future.  We decided that we would parent her the same as the others.  Same expectations...  Deal with the different needs as they came.  At first they were simple things.  Teach her to sit up, crawl, walk, communicate... all the kid milestones.

Now Ayden Jane is 5 1/2.  She has strengths and weaknesses, a DEFINITE personality, a joy of learning and a work ethic like no other 5 yr. old I know.  We choose to find ways to support the ways her body does not work well by itself.  Mostly that is in the form of a diet rich in all things that grow brains and nervous systems.  Lots of good fats in the diet with B12 and iron supplemented.  We know that she needs lots of energy so we add a bit of carnitine to help her use food the best.  We do give her gh because we know her body does not make it.  We add some probiotics to improve the digestive tract as best we can.  PharmaNAC has been the answer to her wacky immune system.  Whew.  Talk about monitor and adjust!

At this point my job is to make sure her brain and body are getting all they need to stay healthy and developing.  It is challenging but the result is amazing.  My mind occasionally wanders to where this path may lead us.  What happens when a bright, creative, independent, goal oriented kiddo grows up to find she cannot control her eating/health so she cannot go 'be' like other kids.  She often tells me she wants to go to Clemson like Kayla.  She wants to be a mom.  (I don't get hung up on the infertility issue, there are other ways to be a mom)  She will want to drive and have a job.  At this point I cannot guarantee her those things.

The flip side of all this is that the research is advancing.  Amazing hope exists!!  Could it be true that all that we are doing now to scramble and protect that growing brain will finally be combined with answers to the future challenge of diet management without constant supervision?  That the keys to the metabolism and complex cascade of endocrinology involved could be discovered and managed in AJ's life time?  What an amazing time to be involved in a tremendous group of people.

If you hear of something called a One Small Step Walk near you, go check it out!

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