I have always had a mixed response when I shared Seraphina's journey with LM in the social media world. People only want to hear read posts about the good.Family vacations-OK, Weddings-OK, Cute pictures of your new puppy-OK, picture of your infant in ICU- NOT OK.
As I walked through the darkness of having a baby with LM... I could not help but become hurt, offend and angry towards this response....
Despite what some believe, motherhood isn't always a walk in the park. Sometimes you are given very high mountains to climb, by sharing a snapshot into my life at that moment...I was not looking for sympathy but strength so I could climb to the top.
Then I realized something... you can not find strength within someone who does not know.
And here we are. The battle between the LM Supermama and social media. Ideally, it would be a supportive, educational platform between a mother and her family and friends...but instead it has become a "doesn't she know it could be worse?!?" target hung directly on the mothers heart. Many mothers are dealing with rude comments and defriending while they should be receiving support and encouragement from their circle.
In my opinion, this falls into the category of bullying. No mother should be attacked for sharing her life ...good or bad... let alone from her uneducated family and friends.
It saddens me when I receive Emails from a LM Supermama saying she is so grateful for CWL because it is her only support system. Her husband is in denial, her family doesn't understand why they need to know CPR in order to babysit and her friends simply can not comprehend the overwhelming stress she feels on a daily basis.
It has to stop. It NEEDS to stop.
And education is the key.
Ignorant people say ignorant things because they simply do not know any better... but when you know better, you do better. It is your responsibly as a LM Supermama to educate your peers on this defect. Nothing will change unless you change it. Do not expect words of encouragement unless you first give words of knowledge. Tell your family what LM is. The symptoms. How serious it can be. Teach them how to respond to the apnea monitor, work the oxygen tank and change the feeding tube. Let them know how hard, overwhelming and stressful this is for you. And then, maybe instead of a rude comment... you will receive a home cooked dinner.
Need help educating?
Request Educational Postcards from CWL to pass out to family & friends.
Send a request to: CopingWithLM@yahoo.com
subject title: PC Request
Steph, this couldn't be more true! When my son was born with LM it was like entering my worst nightmare alone with my husband bc no one understood what we were going through. It was hard to educate anyone bc in the beginning we are ourselves were so uneducated and lost...in pure survival mode..keep baby alive mode. We often felt misunderstood, frustrated and judged when all we needed was support. Words cannot express how thankful I am for all the LM supermammas and for you Steph. Having the support of CWL is unexplainable and a blessing beyond measure. Thank you for all your hard work! -Sarah Fahed
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