An adorable picture of my son warming my heart before an MRI today? Or an evil ploy to build my own ego?
Up for debate.
We have heard it all. Since opening up about our story over 3 years ago, there have been a plethora of responses. People tend to be fascinated by stories of human suffering, yet they can have a strong reaction toward the pain of others. Since we have 2 medically fragile children that have had dozens of surgeries, hospital stays and rare complications, our story is particularly unique. At times I can barely believe it’s real when I say it out loud.
I created a private Facebook community a few years ago to update friends and family on the status of my sons. It became overwhelming and emotional to update each person individually and something very special grew out of that community. We met other special needs families that have guided us through the medical processes, we have received thousands of prayers, we have been supported with meals and tangible help, but the best part was having a safe place to be vulnerable and real about the extreme highs and lows of living in a state of constant crisis. It also chronicled a story and timeline so I could look back and remember that emotions are fleeting and when I’m in the pit of despair, it will soon pass. That community has turned in to so much more than I could have ever imagined.
Of course we have learned some hard lessons. While most of our community has been loving, supportive, prayerful and completely empathetic, there have been negative responses. It’s part of life and part of exposing vulnerability. I recently received a hateful message from a former teacher that I admired so much as a child. She accused me of having Munchhausen, a rare mental illness where mothers fabricate illnesses and intentionally make their children sick for attention. At times they even kill their own kids. The message said many horribly hurtful things and despite knowing how off base it was; words still hurt. No matter how much it may seem that our life is a made up soap opera drama- for us it is our everyday reality.
The judgement trickles in and we are good at letting it roll off our backs. Yet there is always a theme we hear. An underlying word that seems to really bother people.
“They are just talking about all of this for attention.” “Why do they keep having kids? They can barely take care of their own.” “If they really loved their kids they wouldn’t be keeping them alive.” “This is a burden to your life.” “If it were my kids in the hospital, I would take it seriously and not be going out to dinners.” “Other people have problems too and they don’t try to get so much attention for it.”
Can we all do something right now? Let’s stop making ATTENTION a dirty word. I remember a counselor told us once that the best way to prevent PTSD is to openly talk about our experiences. Bottling it up is detrimental to our health. Seeking attention means reaching out to your community and allowing them to go past the surface. Every time you share a photo of your children, shed a tear at your moms group, yell at your spouse that you feel lonely, write a post on social media, raise awareness for a cause you care about; you are seeking the direct focus of love and support. That is an incredibly beautiful thing.
I have experienced some of the hardest things a mother can, yet I desperately try to maintain happiness. I can only do this with constant attention. I need attention when my husband wraps his loving arms around me. I need my friends to come along side me and feel each triumph and pitfall as they come. I need a virtual community to hear and encourage me as I share so many difficulties. I need the attention and focus of others to recognize when I need space, or a play date, or coffee, or a prayer, visit, meal, call to a congressman. I need attention when I would rather be alone because spending too much time in solitude while combating depressing and traumatic experiences is dangerous.
And friends. Fellow moms. Special needs families. Grieving parents. I need you to know…
YOU HAVE MY ATTENTION.
My eyes are on you. My heart is with you. I feel what you feel. You will never feel shamed by me.
And by the way, if you need a new friend- I’m all yours. If you need to dance on tables and need a cheering crowd- my voice will be the loudest. If you need to fight your insurance company- my momma bear claws are out. If you need to get stuff off your chest- vent away. Ask for my attention and you shall receive.
For those that look for attention to celebrate your joys and embrace your sorrows, you are doing it the right way. Life wasn’t meant to be done alone. Attention is a GOOD WORD. I’m proud to bring attention to my beautiful life and feel honored that people have chosen to consider us.
Yes I am doing this for attention. Yes my sons deserve to have their lives shared because they remind us to come alive and appreciate, giggle and find beauty in differences.