Monday, December 8, 2014

Dear Mother of a Chronically Ill Child

Dear Mother of a Chronically Ill Child,

I thought a lot about you today.  I kept thinking about how you get through your days, how you don't lose it every hour, and how you find the energy every day to keep pushing forward.

I can't imagine what life is like for you.  Today I felt exhausted and exasperated as I heard the doc tell me that my son had yet another ear infection.  His 6th one in 12 weeks.  Over the past three months I have rocked him, given him meds, rubbed his ears, kissed his forehead, held him most of the day when he was a disaster, and attended more doctor appointments than I can count.  I have sat with an ache in my heart over the helplessness I have felt over being able to take away the pain from my son.  All over ear infections.  Ear infections...

I have no clue what it must be like to make a decision over chemo, radiation, medications, surgeries, and therapies that are all a hope and a prayer for a cure, or at least remission.

I have no idea what it must be like to watch as your child struggles through a pain they can't understand, and knowing that it may not ever go away.

I can't imagine the struggle it must be to try to care for things in the home that just have to get done, when you know you have a child who just needs their hand held, or their face rubbed.

I can't fathom trying to navigate the medical world with terminology and treatment options.  With second opinions and charts.  Trying to look at a doctor and just hope that they look at their patient as more than just someone to treat, but as someone's baby.  Your baby.

I can't imagine trying to juggle that "Mother's Instinct" with what experts are telling you.  Trying to take what you know in your gut about your child and fit it into what you are learning and hearing about their diagnosis.

I can't imagine the fears.  The "what ifs," the "I'm not going to let my mind go there," the "It's not going to happen..."

And that guilt.  Oh, the mom guilt, the wife guilt.  Are you doing enough?  Are you doing too much?  What about our other kids? What about my spouse? What if we choose wrong?

Ha, and what about nicely managing all the "advice" others want to give you.  Is it comical how everyone becomes some sort of "expert" on what your child is going through and how it should be handled?

But then there are those that just help.  There are people who help, and for some reason you feel guilty because you aren't sure how to repay them...and yet, you know they don't want to be repaid.

I don't know how you find energy to go to another doctor appointment, to schedule things around your career, or find places for the other kids to go.

And I am certain there is begging, bargaining, and the pleading with God.  Praying He would heal your child or at least let you trade places.

I am not sure how you do it, Mom.  I am not sure how you get up each day and work to put that smile on to be strong for your family, and for your child.  I am not sure how you hold it together when you have no clue what the future holds.  And, to be honest, I am sure you don't hold it together real well on many days.  I assume you spend moments crying in the shower because no one can see you and you can just let it out without being questioned or consoled.

Mother-of-a-Chronically-Ill-Child, I hurt for you from the tiniest taste of watching my own child suffer.  My heart physically aches to try to imagine what it is like for you to care, to give, to journey with your child.  You watch your child fight, and you fight alongside them, not knowing how the battle will end.

Your child?  Your child is a warrior.  But you?  You, dear Mom, you are a hero.


Kitbass said...

I thank you for this blog post. As a parent of a child with a Rare Genetic Syndrome the pain is felt every single day in a number of ways but the joys are just as strong. Thank you for taking the time to think of us and thank you for your very kind words.

Fi Dann said...

Just a quick post re the ear infections - Cramial work and chiropractic adjustments tend to work a lot better than antibiotics in kids getting repeat infections. Hope this helps.

Amanda said...

God knew I needed this. I have three Chronically Ill children. All three have a lot going on, and I often feel overwhelmed. They are all pretty stable at the moment, though I am seeing signs that it may not be too long before we need another brain surgery for my daughter. Truth be told you never know how strong you can be until strong is the only thing you can be. Hope that your little guy is doing better with his ears.

Brittney Schwarz said...

By any chance do your children have Chiari Malformation? When you mention brain surgery that's what I think of. My son has Chiari. This blog is everything I needed to hear! Prayers for you all!

Trish Dakin said...

WOW this is just so beautiful thanks for writing it as a mum of a chronically-ill child its one with no diagnosis so no cure without the diagnosis you truly brighten up my day today

Anonymous said...

As a mother of teenage girl with chronic illness all that you have written is true..sadly..
Thank you

Anonymous said...

Thank you for writing this. I pray that you'll never have to really understand what we, mothers with chronically ill kids, go through. But it's nice to know you see us. And even though you can't tell every mom in my shoes this message to our faces, we see it in the waiting rooms, the grocery store and classrooms. We can tell the moms of typical kids who really see us and know that our very different circumstances could just as easily be exchanged. Those moments when our eyes meet, we feel the camaraderie - mother to mother, and it matters. A lot.