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That Space Between Us

You will always be my baby, my child, my soul – you are part of me.

Your challenge is my challenge, your illness is my illness, and your pain is my pain.

I would give anything to trade places and take what you must endure each day.

I would do anything to make all the struggle, fear, frustration, sadness, isolation, disappointment and obstacles go away.

I can lay with you, hold you, distract you, cry with you, encourage you, entertain you, support you and cheer for you but only YOU know what it feels like to live each day this way.

It is such a sweet and empowering feeling of motherhood to be able to scoop up your crying child and soothe them with a warm embrace or gentle kiss on the head.  Your very presence is comforting. Mommy magic can heal just about anything – from nasty boos boos to that mean boy on the playground, and even the monsters under the bed.  Part parent – part superhero, there is no better feeling in the world than the ability to soothe your child’s pain.

 But what happens when you can’t?

For so many families living with chronic pain conditions, this is the harsh reality.  Chronic or debilitating pain creates so many challenges, but the huge emotional divide that it can create between you and your child is one of the more difficult daily obstacles to overcome.

Pain is isolating.  So how can a parent bridge this emotional distance?   I admit, my first response was to become a SMOTHER.

I resolved to spend every waking moment, distracting and entertaining my child so that she would not think about her pain.  As a mom, I may not be able to cure it, but I must be able to at least make it better, right?

Every day, I would make plans, choose crafts, schedule homework, plan movie time and just try to be entertaining because I wanted to make sure that my daughter always had something to do. I now realize that I was afraid to leave her alone, or let her get bored because then she might think about her situation, or even worse, she might feel it.

There were times when she was sad, but I was always there to hold her and we cried together – even when she didn’t want me to.  After all, we were in this pain battle together.  I was determined to dig as deep as she needed me to, to be there in “mama bear mode” 24/7 to make things better for her – somehow.

But all this togetherness began to strain our relationship and actually even pull us apart.  I thought I was helping, but in fact I was driving us both crazy.  At times, I would snap at her and she would scream at me. I was also unknowingly becoming resentful as my household work was backing up, and the pressure of other children and life responsibilities was creating more stress. My intentions were good, but I soon realized that my forced positive attitude and continuous support and encouragement was actually irritating to her. I began to realize that what my daughter needed most was a break  – from me.

No matter how hard I tried, the pain was hers not mine.  SHE needed to own it, she needed to feel it and she needed to grieve it.  I thought I could shield her from all these feelings. In hindsight, by trying so hard to protect her emotionally, I was in many ways, making it worse. Moms are annoying, the teenage years are tumultuous, and sarcasm and eye rolling are all part of the package, I accept that.  But chronic illness adds an entirely new dimension to the parent-child relationship.

My need to “mother her” through this, was overshadowing her true needs – time and space to process things on her own. There is a time and value in being able to wallow in your own sadness, and let it all out. And yet there is also a time that you need a mother’s hug to reassure you that everything is going to somehow be okay. I learned that I needed to allow my child to set the emotional pace each day.  I realized that I needed to recognize her cues when she is pushing me away, and to not take it so personally. As much as I do not want it to be this way – my child has to learn how to live life with pain and that means being able to manage all of the physical and emotional challenges that go with it.  This is a bitter reality that is still hard to digest. No matter how much I may want and need to charge across that bridge of the emotional gap between us, some days I just shouldn’t.

There IS a space between us, and it needs to be respected.  Like the toddler that must be allowed to fall so that he/she can learn to walk on their own, I now realize how faulty my initial thinking was. Children living with pain need the space to find their own way to emotionally cope with it.  We can provide some tools and resources, but we cannot do it for them, no matter how desperately we want to.

Ironically, by stepping back a little, I may have helped strengthen our bond. If there is a silver lining to be found in all of this, it is the fact that all of the one-on-one time, and highs and lows that we have been navigating together has made us closer. We are very tuned into each other – at times it is intense. It may not always be pretty, but it is real.

How has your child’s health struggles impacted your relationship?  Do you have any thoughts or ideas to offer other parents on how to cope?

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