Social media can most definitely have it's ups and downs. There's cyber bullying, risque pics of waaay tooo young girls, insane amounts of photo shop and filters, fights and over all cattiness. But the one thing I love about social media is that when its used correctly it can be such a great tool for communication. Since the birth of my son, Jack, I have turned to social media more than ever before. I had no idea what the heck I was doing with him as far feeding him and exclusively pumping. I was staring down a road filled with doctor appointments and surgeries and speech therapy and I didn't know how in the world I was going to manage all of that and take care of my 22 month old daughter at the same time. Then low and behold, on a tear filled night full of baby screams and not enough breast milk, I stumbled on to an online group full of women who were exclusively pumping ( EPing).
It was as if the skies had opened up and God was shining a light directly towards this group. Women from all over the world. Women who have babies with special needs. Women who have EPed for years... yea that's right... YEARS! Talk about a wealth of knowledge! I could get on this group page at any hour of the night and ask any question I needed. Within minutes someone would be answering.
I had some place to share my failures and my triumphs. A place where the women would celebrate with me and pray for me. I met women on there who live close to me and one of them, God bless her, sent me a bunch of Haberman nipples when she heard that mine were going bad. Haberman nipples are the only way that Jack could drink his bottles and they are NOT cheap. The nipple alone retails for close to $30. Not to mention the valves and rings and bottles. So sending me multiple nipples was not a small thing... it was a big deal to us! Beth if you are reading this, thanks again! You are an angel!
Recently I joined a group on facebook that is for cleft babies. Because clefts are a midline defect, the children who have them can also have a wide range of other birth defects, genetic syndromes, and various other medical conditions. What's amazing about this group is the support that I have seen. I wish I would have found them sooner because the way these people lift each other up and support each other is amazing. It's this busy beehive of people who are navigating different hospitals around the world and sharing their experiences with surgical teams. They tell you suggestions for what to pack for the hospital stays. They post each day, which child is undergoing surgery so that we can all pray for them. They post pictures of before and after surgery. They are honest and raw and unafraid to share the details that are terrifying. They even have a foundation that people can sponsor you and send your child a care package on surgery day to help them feel better, included is an adorable teddy bear with a cleft scar. To me it reveals a glimpse into why God wants us to be in fellowship with people. Why we are made to live in community with other people and to not walk alone in our struggles or our victories.
I may be a bit biased but cleft affected babies are the absolute best babies. They go through so much pain and even when the physical pain subsides they face a lifelong possibility of being the target for schoolyard bullies. They are tough little boogers and they take it all in stride. Yet, through it all they remain sweet and affectionate. They are still trusting and kind.
Any who, I am rambling now. I just wanted to say that yes Facebook and Instagram and Twitter and whatever other social media outlets there are that I am not cool enough to know about, can be pretty crappy. But they also provide me a way to connect with people who understand the fear of dealing with my child's "special needs" and let me know that I am not alone.
If you are wondering about how to get set up with groups like the ones I am in, it is literally as easy as typing in "Cleft Moms" or "Exclusive Pumping" in the search bar. Just in case you are still confused, here are the links to the ones I am in.
https://www.facebook.com/groups/cleftmomsupport/
https://www.facebook.com/groups/19128555821/
^ that one is for EP
also http://www.cleftopedia.com/ is an amazing resource for mothers or fathers of cleft affected kiddos.
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