Monday, April 22, 2013

More than a Mom

From the moment our babies are born, we go in to "mommy mode".  Instincts kick in and we somehow know how to care for these tiny creatures who come into the world with no instruction manuals.  We learn how to feed them, dress them, bathe them, hold them, and nurture them.  For most women, this is something they do easily from instinct.  But what happens when you are required to be more than a mom?

Special needs moms begin their journey like every other mom but then something happens.  We are required to become more than a mom.  We have no college degrees, yet we are required to know how to work a ventilator.  We have no medical training but are required to know how to use the ambu bag on our child and perform life saving CPR.  We are not nurses but are required to know how to do trach care and change a trach.  We are required, with little or no training to perform the following tasks:

1.  work a ventilator, even though we are not respiratory therapists.
2.  clean the trach site and change trachs, even though we are not nurses.
3.  monitor sats, co2, heart rates
4.  order medical supplies
5.  become therapists--feeding therapists, speech therapists, occupational therapists
6.  become a secretary--we have to make numerous phone calls to the doctors, equipment companies and insurance companies.  Our daily life includes juggling many appointments, sometimes several in one day.
7.  become a medical researcher--we scour the internet looking for information and then try to understand the medical jargon in the medical journals that we read.

I am sure I probably left a few things out, but you get the general idea.  We are required to do so many more things than just being a mom.  We have no formal training in these areas and get no pay.  All of this is in addition to our "normal" mom duties like cooking, cleaning, laundry, grocery shopping, chauffeuring everyone around to different activities, etc.  There is really too much to do in just one day.  So, inevitably, something suffers.  Our social life becomes almost non existent, our houses are not clean, we do not schedule doctors appointments for ourselves because we are so busy and exhausted.  There is no humanly way to do all of this without letting some things go. 

We sometimes forget about the normal mommy things.  The other night Noah got sick.  I immediately went to nurse/doctor/medical mode and began checking his sats, CO2, vitals, monitoring heart rate, checking breaths.  I was very concerned because he was shaking, which he had never done before.  Immediately I worried that he was having a seizure, which can be common in CCHS kids.  Finally it occurred to me to do the "normal" mommy thing and check his temperature.  He did, indeed, have a fever, which is not as common with CCHS.  Once I gave him medicine, his fever began to recede and he stopped shaking.  Most moms would have grabbed the thermometer first.  Not me.  I grabbed the sat machine, then the CO2 machine and began checking vitals.  

Because our children have such complex medical issues, we often overlook the normal childhood illnesses.  We expect the worst and have prepared ourselves to do whatever it takes to keep our children alive.  We become doctors, nurses and specialists with no formal training. Many times we learn from trial and error.  This is our life.   Being a mom is not enough for our children.  We have to be so much more.  The responsibility is overwhelming at times.  The choices we make can impact our children's lives forever.  We are so much more than a "mom". 

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