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.
Friday, October 24, 2014
Sunday, October 19, 2014
The Seasons They're a Changin'
I have seriously neglected this blog lately. Life has been crazy beautiful, filled with kid stuff and school and work and internships and ministry and time with friends and etc and etc and etc. I know they say that these few precious years of your kids being small will go by quickly and for the most part that is true, but there are also parts of it that seem endlessly long! The diaper changes, nap strikes, tantrums, and countless toys being flinged at my head don't seem to be coming to an end any time soon. Ha Ha! I wouldn't trade it for anything, though!
Ella is getting smarter by the minute. She is constantly telling me what letter each word starts with and what sounds each letter makes. She loves to learn and to read books. She is also turning into quite the little negotiator... "Dad, how about we watch one more Doc Mcstuffins show and then I will go to bed." "Mommy, how about we eat one more cookie and then we can do puzzles." It wouldn't be such a problem if she wasn't so incredibly cute and articulate!
Jack is turning into quite the sensitive soul. He is full of hugs and smooches. He doesn't like it when anyone is crying or seems sad. His biggest interest is whatever his sister is doing haha. If Ella is playing dolls, Jack is playing dolls. If Ella is dancing and singing, Jack is dancing and singing. If Ella is peeing on the potty, Jack is taking all of the toilet paper off of the roll and shoving it into the trash can... anyway... you get the picture. The last time I wrote on here Jack had just gone through surgery. He is doing amazing and saying new words all the time. They always told me that one day when he is grown, I will have a hard time remembering that he ever had a cleft palate. I am really starting to believe that.
As for Sean and I, well we have been busy with school. Sean finished his first degree in May and is now working on a second one. In the mean time he is still working at WoodMizer and keeping an open mind to opportunities that come his way. I took last year off to focus on taking care of Jack and Ella and started classes this August. Right now I am doing an internship with young mothers, mostly teens. I love it! We do a short Bible lesson, then have open discussion , do goal setting, talk about all things baby related and end with prayer requests. God has truly blessed me by allowing me to get to know such a great group of young women. And of course as a bonus I get to steal endless amounts of cuddles from adorable babies! The goal for me is to graduate with a degree in Human Services in May 2015. I don't have any definitive career goals right now, but I'm just trying to remain open to whatever God has in store for that area of my life.
Health wise I have not had a great couple of months. I will avoid going into too much detail but it deals with girl organs and their inability to work. Cancer runs deep in both sides of my family and I watched as my Uncle passed away from it this summer so it was really important to us to get everything checked out by a doctor. I had blood work done and an ultrasound and the doctor is on top of things. This week we got somewhat of a diagnosis, it's not cancer as far as they can tell, and now we have a treatment plan so that has been a real answer to prayer! I am so incredibly thankful for the people who have prayed for me and called to check up on me during the last two months! I will never be able to find the words to express how awesome the community around us is!
So thats where we are and where we have been. And now here are some adorable pics of the kiddos as a reward for reading our update!
Jack playing in the leaves at the park
Ella in the TeePee at the park
Fun times at the homecoming parade!
Ella playing dress up, instead of napping
Learning about the letter F
Jack being all cute and showing his insane eyelashes
Picking out pumpkins
Ella and her Bestie ( Gia ) at the parade!
Ella is getting smarter by the minute. She is constantly telling me what letter each word starts with and what sounds each letter makes. She loves to learn and to read books. She is also turning into quite the little negotiator... "Dad, how about we watch one more Doc Mcstuffins show and then I will go to bed." "Mommy, how about we eat one more cookie and then we can do puzzles." It wouldn't be such a problem if she wasn't so incredibly cute and articulate!
Jack is turning into quite the sensitive soul. He is full of hugs and smooches. He doesn't like it when anyone is crying or seems sad. His biggest interest is whatever his sister is doing haha. If Ella is playing dolls, Jack is playing dolls. If Ella is dancing and singing, Jack is dancing and singing. If Ella is peeing on the potty, Jack is taking all of the toilet paper off of the roll and shoving it into the trash can... anyway... you get the picture. The last time I wrote on here Jack had just gone through surgery. He is doing amazing and saying new words all the time. They always told me that one day when he is grown, I will have a hard time remembering that he ever had a cleft palate. I am really starting to believe that.
As for Sean and I, well we have been busy with school. Sean finished his first degree in May and is now working on a second one. In the mean time he is still working at WoodMizer and keeping an open mind to opportunities that come his way. I took last year off to focus on taking care of Jack and Ella and started classes this August. Right now I am doing an internship with young mothers, mostly teens. I love it! We do a short Bible lesson, then have open discussion , do goal setting, talk about all things baby related and end with prayer requests. God has truly blessed me by allowing me to get to know such a great group of young women. And of course as a bonus I get to steal endless amounts of cuddles from adorable babies! The goal for me is to graduate with a degree in Human Services in May 2015. I don't have any definitive career goals right now, but I'm just trying to remain open to whatever God has in store for that area of my life.
Health wise I have not had a great couple of months. I will avoid going into too much detail but it deals with girl organs and their inability to work. Cancer runs deep in both sides of my family and I watched as my Uncle passed away from it this summer so it was really important to us to get everything checked out by a doctor. I had blood work done and an ultrasound and the doctor is on top of things. This week we got somewhat of a diagnosis, it's not cancer as far as they can tell, and now we have a treatment plan so that has been a real answer to prayer! I am so incredibly thankful for the people who have prayed for me and called to check up on me during the last two months! I will never be able to find the words to express how awesome the community around us is!
So thats where we are and where we have been. And now here are some adorable pics of the kiddos as a reward for reading our update!
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