Living with Life's Complications

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Blogging has been difficult for the past couple of months, hard to focus, hard to always find that little something that would be of interest in a blog.

I mostly think about blogging about the difficulties of our granddaughter’s medical situation; my niece has a blog about her cancer journey. Or about our life with the mostly DIY remodel that has dragged on for months upon months. This is not what I wanted for my blogs to be, they have been about those off thing that happen.

Unfortunately, most of our life for the past couple of months has been consumed with both of the above. Flying to San Francisco several Sunday’s to stay for a week to care for our 15 month old granddaughter, visiting our new granddaughter when possible (driving 1 hour each way) making sure the laundry and dishes are done and so on. Hubby drives up (5 hours) on Wed, then we return home on Friday. I’m not complaining my son and daughter-in-law have a tough time right now.

Basically, my granddaughter was born at 30 weeks. She has now been diagnosed with Noonan’s Syndrome but in the last few weeks she has had more problems crop up: a partially collapsed lung, a kidney problem, and more recently a breathing problem in which her trachea is too soft. She also has a bowel that is not placed right and it must be repaired this next week.

Our granddaughter’s birth is just one of so many born with birth defects. When one starts looking at genetic defects the lists are so long, it is amazing any of us survive as well as we do. But I have to wonder about these kids and their families.

My son and daughter-in-law have money so medical care is not a problem but they are not the norm I’m sure. When these babies are born and survive we hear it called a “miracle”; but is it really a miracle? Or is it modern medicine? Medicine has come so far and what was once a baby sure not to survive now is treated with every treatment to give a high chance of survival. A friend assured me that not that long ago the neonatal unit she worked in did not try to keep these kids alive, but due to litigation everything has changed.

But with survival comes the question, at what cost to the family? Can the family afford the cost to treat the child throughout that child’s life without bankrupting the family? What about the caregiver who must now devote their live to this child? What about the other siblings who do not get attention because of the sick child’s needs? What about the taxpayer who supports many of these children?

I must confess that we, my husband and I, benefit from this exact situation. Kid is 20+ years old with the mind of maybe a 1 month old, mostly blind, and mostly deaf. My husband is in home health and cares for the kid 2 days a week. Easy work and supplements the pension checks now. But there is no quality of life and never has been. As a child he was entitled to an education so my husband dutifully accompanied him to school on the special needs bus. Sat there while the teachers did whatever they did.

I do not know what I’d choose if I were placed in this situation. We do not yet know the extent of our granddaughter’s disability if it will be slight or sever. We can only hope and wait.

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