WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, January 18, 2012

When to test the siblings for Mito?

This is something that has really been on my mind this last week.

When you know one of your children has Mito, do you test the siblings?

Not really a yes or no type question. Our oldest daughter was born almost 11 weeks preterm. She had some fine motor and gross motor issues which were expected due to prematurity. Now though we are "seeing" all sorts of connections which make us wonder if we should encourage her to be tested.

She has chronic constipation(would go nearly 2 weeks!), chronic reflux,(she was a volcano as a baby- 4 ounce in, 3 highly pressurized ounces back out). She has some very tight muscles. Frequent lung infections as a child. Allergies,asthma. Now we are noticing some new issues, PCOS, swelling,red,hot joints.. anxiety. But, she has great energy compared to her sister. Probably not as much as other young adults, but good. I have days where I think I have been irresponsible for not pushing for more information and I really think I might just be in massive denial that both my girls may be afflicted. Yet, she graduated U of H at with her BA in Anthropology and with honors at the age of 18. She is brillant and beautiful and feisty and now at 19 it really is more of her choice whether to go looking. I worry about her health records being forever labeled, or down the road as our laws continue to change to more invasive policies, if they would use genetic data against her. Right now she has the potential to be whatever she wants to be, we as parents worked hard to get her there. Right now, I don't think she needs the testing. Quite possibly she is my "healthy" baby, and may stay that way.. Yet, often enough we get asked, "Have you tested Sara?"...

I suspect a lot of what is on my mind right now is "empty nest". It seems to force me to think back on that stage in my life when they were little and remember the decisions we made then. I did not think it was possible to have empty nest with both girls living with me, but it is.. they think for themselves, cook, clean(iffy!), they just don't "need" me any longer. I long for the days when making a funny face would send them into peels of laughter! The days where a dandelion was the most beautiful flower they had ever seen..

We decided after Abby that we had no business having more children. Between finances and the obvious health issues in our two living girls, it would be incredibly selfish of me to have more. I wonder if our choice to not gamble on having more has made me more protective of Sara and any potential labels to her.. I am struggling with,"clearly it is an issue and we should find out" and "leave well enough alone."

We are grateful to not need State or Federal resources, despite so many financial ups and downs we have always taken care of ourselves. Sometimes that has meant the top ramen diet plan,selling the wedding bands(something so many Americans have faced this last 3-5 years)but I feel good about making it this far without government dependency. I think I often feel I have to justify to myself that we did the right thing in not having more children. If I base that decision on finances and/or being fiscally responsible then I don't have to deal with the emotions and moral dilema's that came with our decision not to have more kids because we feared bringing more disabled children into this world.. I wonder how bad our financial outlook would have been had we had more with Mito? Isn't two enough anyway? Even if they were healthy?

We have student loans,plenty of bills, poodles and dreams.. I am a little panicked that my future might not hold grandchildren(that was always the end goal-to be a valued part of our daughters lives and their children's- part of the white picket fence legacy dreams)but despite occasional pangs to feel a baby in my arms- we feel we made the right decision. For the two we already have, for ourselves, for society. So, maybe me not testing Sara is going to bite us down the road,but I have to trust our guts-so far every time we trust our gut things seem to work out fine.

We still have plans, dreams and a future- it is just a little different then the white picket fence I dreamed of in my 20's.

Knowing now whether Sara may have Mito or the potential to develop Mito won't change her or me. We can deal with it down the road, if and when we need to know. Plus, she is grown, her choice when she is ready. Yep, I think I have empty nest.

1 comments:

Shan said...

Thanks for visiting my blog :) Love the etsy!

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