Hard days (weeks) and then we go on…


In the midst of g-tubes, medical mysteries, doctors, school, disabilities, abilities and all the rest of this caregiving life, there can be standout days, harder-than-usual days.  Days of uncertainty, confusion, discouragement and fear. The last handful of days have been that for Little Miss and me.

Two years ago it all started with a bad headache and the snowball went tumbling down the mountainside, gaining mass and momentum until it crashed into a tree and we were all holding our breath wondering if she could live through the pain, if she’d ever be the same, what the next minute would hold.  It took 18 months to figure it ALL out and get it resolved.  Meanwhile we had 3 ambulance trips, 3 hospitals and a rehab center, a biopsy of material around her spinal cord, a month in a wheelchair, a procedure by an Interventional NeuroRadiologist (whoever knew they had that anyway) followed by 5 days in ICU, etc.

So 6 days ago began a severe headache with fever.  Good!  Fever means it isn’t the same thing. Those symptoms stopped after 3 days but then began significant pain in her back for the past 3 days. Tylenol didn’t touch the pain. Ibuprofen helped significantly. But we did not dare miss a dose. Because just making it to the 6 hour dose intervals was no small feat when it came to managing the pain.  It was scary.

The question over the last 36 hours was: to Emergency Room or Not to Emergency Room????   Our BDE was not in her office yesterday or the day before. [Oh btw, BDE is an award we have given to our doctor – the BEST DOCTOR EVER award.  And we know LOTS of doctors. She is the best, by far!!!] Anyway, we held off on the E.R. and made the trek from the ‘burbs to the City this morning to see our Dr. BDE (pronounce Beddey).  I love my GPS, but I digress.  The E.R. never works out well for us because Little Miss never has anything they can figure out.

Pain was not severe OF COURSE, when we were in the docs office.  (Why does that always happen??) But knowing Little Miss’s history over the last two years, Dr. BDE said “I’m not finding anything that we need to treat. So I think it is important that you go ahead with the tests recommended by Dr. so-and-so in follow-up to her procedure last August. IF this does not go away in the next week, or IF it gets worse at any time, call me immediately and we’ll do whatever we can to get those tests expedited.”  Okay, good.  Specific instructions for me to follow. (Yes, of course I asked a LOT of questions first, and she answered them all.)

So, we are home. She is happy. I’m processing.

I am GRATEFUL to have 4 amazingly wonderful friends who call and say “HOW ARE YOU DOING?” (and they aren’t even parents of special needs kids!) and that helps me process. I am a verbal processor.

Here’s what I know after today: I can only live in the day I’m in right now.  I cannot manage the things that haven’t happened yet. If I live in fear of the things that have NOT happened, and might NOT happen, I’m wasting today and all the days that I spend worrying.  True, I do not know where this is going. Is it a muscle spasm or a malformation of an artery near her spinal cord? I do not know.  Here’s my plan:

  • I hereby give myself permission to let go of the fear.
  • I give myself permission to come down off Crisis Mountain and live the rest of today like a normal day.
  • I give myself permission to NOT be hyper-vigilant.
  • I can be regular-sufficient instead.
  • I’m going to do some deep relaxation breathing.

See you tomorrow! I’m going to print those bullet points out for review as needed.  I plan to rest well tonight. I hope you can too.

One thought on “Hard days (weeks) and then we go on…

  1. Today was one of those days for me! It was nice to read this post and know that other moms feel the same way. My daughter just turned four and we are dealing with some behavior issues. She has had lots of health needs since being born early at 26 weeks and weighing only 12.9 ounces. I just keep praying for wisdom and strength to make it through today! Thanks!

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