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Special needs mamas, what we do matters

By Laura Spiegel

We mamas don’t always believe in ourselves. We don’t trust our intuition. We second guess whether we are good enough, strong enough, or just plain “enough.” We question ourselves far more than we question others.

We are our own worst enemy.

For years, I worked with doctors and nurses who were trying to help people fit the day-to-day management of chronic illness into their busy and hectic lives.

One of their biggest stumbling blocks? When people didn’t believe that what they did really mattered.

They could have all the skills in the world, but if they didn’t believe that they could “do it” – or if they didn’t believe that their actions would make any sort of meaningful difference in their lives – they often failed.

It’s like that old Henry Ford quote. “Whether you think you can or you think you can’t…you’re right.”

How many other mamas out there can relate?

Some days I feel like an imposter in my own life.

Can I really keep my young daughter’s cystic fibrosis on track? Can I really raise her to be diligent in her self-care, yet unrestrained by her disease (or by the world’s perception of her disease)? Will my son grow to resent me for the myriad of allowances I grant his sister? Should I even be writing this blog, or should I be spending this time with my family?

Ugh. Why do we do this, mamas?

Why do we reserve some of our harshest words – our deepest criticisms – for ourselves? Why do we resist reaching out for help when we need someone to lend a hand or lift us up? Why don’t we just accept that life is messy, and we are doing the best that we can?

What we do matters, mamas, and we are making a difference every day.

Changing feeding tubes. Changing diapers. Challenging doctors. Challenging preconceived notions. Counting pills. Counting bills. Calculating insulin doses. Calculating insurance payments. Dressing kids. Dressing PICC lines. Doing therapy. Doing homework.

Weeping, laughing, shouting, soothing, smiling, fearing, hoping, planning, and all the while…loving.

Building memories. Building bridges. Shaping futures. Shaping lives.  

We are doing a good job.

We are loved.

And above all…we are not alone.

For 12 years, Laura Spiegel partnered with physicians and psychologists to help people with chronic illness lead happy and healthy lives. Her professional and personal worlds collided in 2013 when her own daughter was diagnosed with cystic fibrosis. Laura founded Paint Her in Color after realising that emotional support for parents like her was hard to find. Visit http://www.paintherincolor.com/ to find out more and read more of Laura’s writing.  

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