Staying in the moment as a sober mom.

30Apr09

Looking out to sea

When my youngest daughter, E., was about two years old, she was diagnosed with neurofibromatosis, also called “NF.”

NF is a genetically determined disease that affects many parts of the body in many ways. It causes tumors to grow along the nervous system, and these can be benign or cancerous. Even the benign ones can be dangerous, as they can develop in a manner that interferes with or envelops vital tissue and organs.

There are three types of NF.  My daughter has NF-1, which is surprisingly common: it occurs in 1 in 3,000 births. NF-1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain and spinal tumors; loss of limbs; and malignancies.

NF also has all sorts of other disorders associated with it, from small stature (which E. has) to scoliosis (which she also has) to learning disabilities (which she may have – not sure about that one yet).

There are two things about NF that are particularly troublesome for me:

1) There’s no cure…yet.

2) It’s extremely unpredictable, and there’s no way for doctors to know with any certainty just how or when the disease will manifest itself in E, who’s now nine years old.  We simply have to see each of her six specialists on a regular basis, get her annual brain and spine MRIs and her bi-annual x-rays done in a timely fashion, and then…see what happens.

She could be mostly fine for the rest of her life, and just have to deal with her scoliosis and some associated spinal problems.

Or, we may discover that one of the Unidentified Bright Objects (UBOs) revealed by her last brain scan has developed into a full-blown tumor. Or that the protective sheath surrounding her spinal cord — an abnormal swelling of which her 2007 MRI revealed — has ballooned out even more, causing her vertebrae to weaken and her scoliosis to worsen.

We were told by E’s pediatric orthopedist last week that, given her condition at this point, this second scenario is fairly likely, and that corrective surgery will probably be necessary at some point in the future. Trouble is, the surgical procedure typically done in such cases would be complicated and risky, because of this swollen spinal cord sheath.

Sitting in the examining room with E. and her dad as the doctor discussed this, I had to muster every ounce of concentration and willpower to STAY IN THE MOMENT and not go traipsing down the path of “What if?”  I didn’t want to imagine E. in the near or distant future on the operating table, or recovering from major surgery, so very small and helpless and vulnerable.

So I stopped myself. I stopped the tears from welling up in my eyes and I looked at her and consciously appreciated how spunky and vibrant and very, very okay she was RIGHT NOW. I didn’t want her to see me upset. After all, there was nothing to be upset about at that moment. At that moment, everything was okay.

After the appointment, I chanted the Serenity Prayer over and over inside my head as I walked to my car, E.’s small hand clasped in mine. I hugged her tightly when I dropped her off back at school.

And then I cried for a little bit in my car as I drove to work. When I parked, though, I wiped my cheeks dry and took a deep breath.

I knew that I wouldn’t use this situation as an excuse to drink later that day. I knew I wouldn’t drink after our appointment with E.’s geneticist next week, either. Or after her next MRI, in the fall.

No matter how overwhelmed and powerless and scared and worried I was, I wasn’t going to drink. I didn’t have to drink.

I used to hear people say that in AA meetings and not understand what it meant. “You don’t ever have to drink again.” I’d never really thought of myself as having to drink. Just really, really wanting to drink and…not being able to stop.

But at that moment last week, I got it. I got it. I understood what those people had meant. I now had the tools and resources, thanks to the AA program, to get through whatever life handed me. I didn’t have to use any current troubles or potential problems as reasons to pop open a bottle of wine. I could stay in the moment — completely sober — and I would be fine.

And my worries and fears about E.? I can offer those up to my Higher Power, and ask for help. So I have. And I will continue to do so.

This is not to say that I won’t be plagued with periods of worry and stress and fear about E. and her future. I’m a born worrywort and control freak, so this is a given. But at least now I feel know that I have somewhere to turn besides the bottle  — and something to do besides drink.

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9 Responses to “Staying in the moment as a sober mom.”

  1. This is a beautiful post, L. I will keep your baby girl in my prayers.

  2. 2 C

    Thank you – that means a lot.

    That’s her in the picture, about three years ago, during a visit to the Gulf Coast of Florida. That shot just makes me smile – makes me think of her as a little mermaid…

  3. 3 Chaz

    Awesome C.

    My step son has some special needs. I have seen very close to home how it affects a parent and family.

    My wife works with kids with special needs too. Many drink to cope.

    You are taking a rare and wise path to deal with your stress in ways other than drinking. Feel good about it. You are doing a good thing.

    Ciao.

    Chaz

  4. 4 C

    Thanks, Chaz.

    I know there are plenty of people out there with much more difficult lives and challenges, as well. But for the longest time all I could do was dwell on the unfairness of my own situation, throwing myself little pity parties that inevitably led to a horrible hangover.

    Thank goodness drinking is no longer my default.

    I do feel good – it is a good thing.

    Take care,

    C.

  5. 5 Dallas

    What an amazing post. Your family are in my thoughts today.

  6. I will keep you and your daughter in my prayers. Love is being sent to you and I really appreciate your honesty and your briliant blog. Thank you!

  7. 7 Stork

    Staying in the moment…. so difficult, and I praise you for working towards that. Especially with the worries you have as a mom. E. is an amazing, charming and gifted girl, and we will keep you in our prayers.

  8. 8 Sharon

    Beautiful…simply beautiful… I have a daughter with a learning disability… I “get” your pain of not being able to fix it… I also “get” your spiritual stance… THANKS!


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