MTM-CNM Mothers...

This is the 5th in a series called "Reflecting on Mothering..."

Having a child with a rare life-threatening disease or disability really shows a woman what she is made of. I'd like to say that all women could bear one of these children, but I don't think it's necessarily true. This might offend some, and if this is you...please feel free to quit reading now and move on, because having a child with a life-threatening disease tests you to the core. You face life and death and make decisions that could be life altering on a daily basis.

Eleven and one-half years ago, when our journey had it's own beginning, how was I to know how much my life would change.  I was a bit naive at first, I must admit, not having any real clue as to how sick or fragile my sweetest boy was. The first four months were like having a continuous cold shower where the water turned off and on at random. I never knew what was coming. One minute we were home being a family blissfully together, then the next minute we were rushing him to the ER, his life potentially on the line. Soon we were a direct admit, which means that the doctor just calls and we took him straight to a room rather than going through the ER. This really means you are now a "Frequent Flier," a title commonly use for those who spend a lot of time in the hospital. The next three years were filled with hospital visits and extended hospital stays. We watched as interns rotated through, knowing the names of each on the list. We spent about half of those years in the hospital, our daily lives and the lives of our other children disrupted.

MTM-CNM Mothers are a unique sort...some of them have watched their angels gain their wings, some have had more than one angel go to The Playground in Heaven. There is no fairness in our world, a world where there are so few children to begin with. With less than 500 affected people in the world, losing more than 90 children and young adults over the last nine years seems beyond unfair. There is no rhyme nor reason to explain it all.

MTM-CNM Mothers have a medical degree, of sorts, one not granted by any medical school, but rather a medical degree born from experience. They can talk to you about respiratory bugs, whether they are gram negative or positive, spirilla, cocci, or bacilli. What antibiotics work best...when to treat with tobramyacin, septra, or another antibiotic or let their small bodies fight alone...to use a nebulizer, vest, or cough assist, what the ventilator settings are...MTM-CNM Moms can spout this information off without blinking an eye. Need extra supplies? Posting for help on Facebook will surely get a response and soon supplies arrive in your mailbox.

MTM-CNM Mothering is a job with twice the challenges and twice the rewards. Knowing my sweetest boy will be twelve this year is a gift. So many haven't made it to twelve...each and every day is a gift. I don't like to think about those possibilities, rather plan a future for my sweetest boy that involves growing old, loving fully, and living freely. I, like many other moms, want it all for our children, knowing what might be possible yet still we forge ahead.

These MTM-CNM Mothers form a circle around one another, with arms outstretched, holding one another up. When one is weak and falling, there are others to keep them afloat. We are clear that words are not enough to heal a broken heart from losing one's child, that there is nothing that can be done, and yet, the community circles and does it's best to support one another. We all grieve and mourn for the loss of every child, knowing our own world is a little smaller. We celebrate every achievement as if it was our own child, knowing that one's gain may be a gain for us all.

MTM-CNM Mothers are the strongest women I know...whether I have met them in "real life" or just over the internet. These are women that I count on, for the survival of my own son and sometimes my own survival, just as I know that some have counted on me for the same. These are mothers that reach beyond the heights of mothering, finding their superhero capes need to be bigger and stronger than normal capes because they might not be catching just one child, but a community of children (and mothers) who rely on them to be along this road, ready and willing, to assist, support, and love at any given time.

Mothering a child with MTM, my last and sweetest boy, has brought me more joy, fear, love, and strength I ever imagined possible. It has been the greatest and scariest moments of my life and without him, I would not be the woman or mother that I am now...for that, I am forever grateful!

Comments

  1. I don't know how you do it. (Well I guess I do, because you have to, because when you have a child, there's no other option.) Watching my baby in ICU for 10 days was hard enough, I can't imagine going through it for so long. My thoughts are with you.

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