I have debated for so long whether or not to post something like this but recent events have stirred up a bunch of emotions and I really want to get some things off my chest. I've just kept so much inside and I have read other blogs and some have been mommy posts and I realized it's ok to feel this way sometimes and to wanted to share so maybe someone else can read it and be validated that's it's ok to have these feelings sometimes. Phew here goes....
Brandon and I often think about the day our lives changed on March 20, 2015 we brought another beautiful little girl into this world and we were now parents of 2 amazing little girls. We were so excited to start this new chapter of our lives. Then 4 days later our lives forever changed again, our sweet baby started having seizures. Then on March 25, 2015 our lives not only changed again but was flipped upside down and spun in a blender, when we recieved Emma's diagnosis of Lissencephaly. I remember being in shock and not really understanding what our life was going to be like, how were we going to handle this as parents, how was Ava going to handle it, how was Emma going to progress, will she eat, will she sit up, will she crawl, will she walk, will she talk, what will her life expectancy be?.....and still to this day all we can say is WE DON'T KNOW!!! The unknown races through my mind EVERY SINGLE day! This morning as I dropped the girls off at my parents house Ava said to me, "mom I hope Emma doesn't need a wheelchair." It was so unexpected I was caught off guard and said "ya we hope she can walk one day huh, but she will probably need a wheelchair to help her most of the time but it's ok, right?" she replied "Ya it's ok I will just learn to push her around is that Ok?" holding back my tears I said, "yes sweetheart that would be awesome and I would love to teach you how to do that". She seemed satisfied with my answer and ran inside to see Grandma and Grandpa. As I emptied the car it was all I could do from breaking down. Ava must think about things a lot more than I thought and I hope that she is dealing with things ok.
The unknown is hard and sometimes I have a hard time focusing on all the amazing things that Emma is doing instead of what she isn't doing. She is eating on her own and not only breastmilk but she loves peas, avacado, sweet potatoes, and bananas. This is huge that she is thriving!!! We are getting better head control everyday and I am so proud at how hard she works everyday and during therapy time she lets us push her. I am so grateful for the emotion that she shows everyday. Eating and emotion was something that they said might be hard for her to ever achieve. Heck she even locks her lips up when she doesn't want to eat anymore that is huge in my opinion. But sometimes as I mentioned above it hits me that she is NOT sitting up, not rolling, not playing with toys, and she still doesn't have a lot of awareness of her hands, and no crawling. As a parent it hurts and I am sure her delay will hit me a lot of times, but I need to remember to celebrate all that she IS doing instead of what she is not (sorry this paragraph was for me to remember all that she is doing and how amazing it is).
One story that comes to mind is last Saturday morning Ava came in our room and asked to take Emma with her to watch cartoons. We said sure and she pushed her rocker into her room and they watched cartoons. As time passed I heard Ava talking to Emma and she was telling her about all the characters on Doc McStuffins and telling her all about the show. As I listened my heart hurt because all I wanted was to one day hear Emma talking back to her big sister asking questions, and the reality is that most likely will not happen. My heart was crushed not even for me but for Ava and Emma. Sometimes the reality is hard but it is something that we need to Embrace and enjoy all these moments for what they are and not what they aren't. These two girls will have an incredible bond with their own form of communication that no one else will understand and I already see it everyday. Ava is Emma's biggest Cheerleader!
When first became parents we thought everyday of the things that Ava would one day do, when she would walk, talk, start shool, drive, graduation, college, marriage, children, etc. With Emma we have learned to slow down and take things day to day beacuse everyday that we wake up and have both of our girls is a true blessing and miracle. Life is a miracle, Embrace every moment and stop thinking too far ahead, Enjoy the little things that life brings.
The pain is real it hits us everyday we hurt for our girls. We hate seizures with every ounce in our bodies, we hate all the pain that it brings to our lives and to our little baby girl. We hurt everytime Emma cries during therapy but we keep pushing her because we want whats best for her. We will always be her voice and her biggest advocates, but through it all we will hurt. But the hurt will always be on the back burner because the love and joy that we get when this little girl smiles melts our hearts and we are so grateful for her and so blessed to have her in our lives. She will never be "better" she will never "out-grow" this, this is our lives and we have learned to Embrace that and cherish every moment. We pray that one day we can create enough awareness that maybe they might find a cure and we can help by sharing our story of our sweet Emma!
EMMA:
Emma's eye appointment went pretty good. The outcome is that she CAN see but her eye muscles are a little weak just due to her developmental delays. We are going to use the glasses to help build her eye muscles and try to help her with her eye crossing (you might see some pictures or videos with her eyes crossed and it is just her trying to focus.) We luckily had the frames already from her big sister having to wear them from 7-11 months of age. So we are just getting new lenses in them. We should be getting them anyday now.
On another note we have had a blast this October with the pumpkin patch, trunk or treat, and Cornbellys. Here are some pics of our fun family times this month.
Thanks for all of your love and support we can't thank everyone enough. Remember we still have wristbands for sale if you'd like one message me or email us and we can get it to you! email: jbatapia@yahoo.com. Keep checking in because we also have some more friends who have put together another awesome fundraiser coming up on Nov. 21st. more info coming soon! We also still have many friends and family asking if we have a donation account set up and yes we do here is the link if you are interested
https://www.youcaring.com/medical-fundraiser/please-donate-to-help-with-current-future-medical-needs/343866. Thanks again we hope you all have a safe and fun Halloween and remember to EMBRACE LIFE <3
