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It’s been a while now since I have written any advice for special needs moms. A lot of that is because my boys are both more than old enough to read and process the things I write and I am sensitive to how they perceive things. But the one thing I know for sure (in the words of Oprah) is that a special needs mom (or ANY parent) HAS to follow their gut. Its the one thing that you were given that is more valuable than any doctor has or any medical book could ever teach.
I learned when my youngest (born with spina bifida) was just 4 months old that doctors didn’t know everything about him that I did. He needed a shunt (a device that drains extra fluid off the brain) surgery and they kept saying no. They were experimenting, seeing how far they could push the limits. I knew what he needed in my gut and one day that I will never forget I packed him up and demanded they admit him for the surgery. Everyone thought I was nuts. Turns out my little guy who could never open his hands came out of surgery with them open. Right there I got my power and knew if I did nothing else in all of this mess I knew I had to follow my gut.
In his almost 17 years there have been thousands of times when I have just had to take a deep breath and listen to that inner voice-big things like should we homeschool, or be the 5th kid (or the 11th or the 7th) to do a major surgery, should we fly all over tarnation to pursue things our local docs laughed at? All of which were YES. E.V.E.R.Y time I operate from my gut it has turned out well for us and when I doubt a decision, it usually means its not right at this time. It’s my one super power in all of this, and guess what? You have it, too. You just need to trust it. When you are scared and confused and not sure which life threatening choice to make next-take a drive to a scenic place or go out in your backyard when the kids are down for a nap and just BE. Just let all the thoughts clear out of your head and listen to what your gut is telling you. Sometimes it takes a while to hear it but its screaming at you. I promise. You just need to clear out the other noise so you can hear it.
Sadly, there have been many times I didn’t go with my gut. I didn’t listen to me but instead listened to the experts. I have had to learn to forgive myself for those decisions. It’s a powerful thing as a special needs parent to just forgive yourself. It’s too easy at times to listen to the white coats that know it all with all their degrees on the wall. Unfortunately, no one gives us fancy degrees that say “Degree in Being a Kick-Butt Special Needs Parent”. In fact…we need this…
Print this and tape it on your mirror!
Awesome post Barb! As a special needs mom myself I totally can relate. Our instinct can be so much more than any “specialist”. And yes,we also have to learn to forgive ourselves on those times we ended up making a different decision,. Hindsight is 20/20. {{{HUGS}}}
Thank you!! Damn 20/20 always kicking us in the butt 🙂
Barb thank you for writing this very important reminder. Your message is so so important to ALL parents and caregivers. When I was 12, my older brother was brought into a research hospital to try to identify a strange illness. They did dozens of tests and then an angiogram before the advanced technology that exists today which was one of the most painful tests they had performed on him. When the next test to be administered involved opening up his brain, my parents said NO. In spite of the fact that my grandfather was a doctor and supported the course of action, my parents GUT decision told them NO – so they just took him out literally at 11pm at night and brought him home. They just knew that would be bad decision for him. Fortunately soon thereafter another doctor diagnosed him with Lupus and he now lives a healthy productive life.
That’s amazing Monica. You know as a mom now that there are just some times when for no rational reason you know with all your heart the right thing for your kid. Unfortunately, there are so many times we just can’t hear what we need to because there is so much ‘noise’ around us. I am SO glad your parents were able to hear their gut!