Why My Kids Chronic Illness Makes Me Grateful To Moms I Have Never Met

By DM Sullivan

onlinemom

 

When a child is born, so is a mother. 

I remember feeling as though my heart would burst snuggling with my sweet smelling newborns in a haze of pure joy, exhaustion and newfound insecurity that comes with the realization that you are now responsible for another human being.  It’s the most important job in the world, to raise a child, to love a child, to protect a child and to teach a child to navigate the world and become a kind and productive person.  As moms we all dream for our children, and on an unconscious level make promises to always be there for them and do whatever it takes, to meet their needs.

So when my kids started having health issues, I rose to the call as any good mother would, scheduling and driving to appointments and finding specialists who might be able to help. 

And when these appointments became more frequent, I offered perspective and even a light touch of tough love, “Yes, I am sorry that your friends don’t have to deal with all this, but for some reason we do. No sense in feeling sorry for ourselves, let’s just get it over with and move on.”

And as these appointments became more challenging and physicians could not always offer answers, or helpful suggestions, or perhaps did not interact with us in an empathetic or supportive way, I would buffer the strange sense of disappointment, with a dash of comfort and a sprinkle of strength and explain that it is just not personal.

And as diagnostic testing, and surgeries, hospitalizations and needles became even more frequent, I upped my game, stayed strong and hugged hard, found the humor and held hands and distracted with everything I had. 

And as physical pain revealed, that it was not something that was going to go away, I had to push aside sadness, temper instinctive urges to coddle and pull out my tough love, to help them develop the skill they will need to live this life. 

And as that inevitable sense of isolation came calling, I reached out, opened my home, put more effort into keeping connections and encouraged my kids to remain engaged with life.  Cushioning that gentle blow that yes, other peoples lives go on, but it doesn’t mean they don’t care or aren’t thinking about you. They are.

And when I felt alone as though living in an alternate universe…. I found THEM.

An online group of moms whose kids also lived with complex pediatric pain conditions. These women became my lifeline.  

They got it - all of it - the good, the bad AND the ugly.

Many share a diagnosis, and long, strange story of unanswered questions, unclear treatment paths, pediatric pain rehabs, mind games and medicine.  Each day we share information gathered at our appointments, conversations with specialists, articles on research and treatment and ideas on how to keep our kids moving forward.  When someone is in-hospital, or crisis-mode, the moms seem to always be there to help navigate situations as they develop.  And when someone needs a pep talk, a hug, a prayer, the moms know what to say, supporting each others kids, pumping each other up, holding our breaths together, and lending strength when needed.

I am blessed to have great moms in my life.  My own mom who is there for me everyday, who has taught me how to be strong by the example that she sets. My Aunt who has shown me how to keep moving forward, even when everything is falling apart.  My mother-in-law who swoops in when needed and a cousin Amy, and family that love and support my kids. My mom friends who stay by my side and who I know are there when I need them. But the daily details and stresses I face cannot truly be understood unless you live this life.  Raising kids in this chronic illness space would have broken me years ago, if I hadn’t found the online moms.   

So this Mother’s Day I want to thank and honor the moms I have never met, but am so very grateful to know. To the moms who take the time to share information, support and insights, to share and care and worry about children that they too, have never even met.  To the moms who have somehow found the bandwidth to create non-profits and do advocacy work to try and make a better life for all of our kids.

To ALL moms who are fighting hard to care for their kids…. HAPPY MOTHER’S DAY!!!