Feeling Blessed?????
As I reflect on the last year my heart hurts from all the decisions we have had to make for Emma. Some wrong, some right and some that we will NEVER think about again. Decisions from medications, treatment options, diets, doctors, equipment, and seizures. But with all of the decisions and heartache, between thousands of seizures, we feel blessed.
Blessed??? you ask how can you feel blessed, you are watching your daughter suffer through multiple seizures a day, watching medications and treatments not work, and you are constantly tired. Well I would have to say yes to all those things, but here are some other things you may not see that help us to see our blessings......
*Teamwork between two parents who love their girls more than anything
*Amazing family who calls and checks in everyday
*Drs and therapists who call, email and check in ALL THE TIME just to make sure not only Emma is ok but we are ok as a family
*Drs and therapists who support your fundraisers, Help get you a Make-A-Wish (and rush it), and attend important moments
*Drs and therapists who research to find the best treatment and actually listen to our concerns and/or opinions
*Our Lissencephaly family who are always there to help; answer questions, suggest ideas and most importantly there to listen
*Amazing Foundations who help us to have family time (Mascot Miracles, Angels Hands Foundation & Embrace Life Foundation), make our lives easier (donating us a van Angels Hands Foundation), and helping us purchase supplies our insurance wont cover (Embrace Life Foundation).
*Brandon and I also have great jobs with bosses who understand and are willing to work with us when things come up so that we can both be there for Emma.
*Having such an amazing 6 year old who loves her sister so much. Does incredible at school, dance and recently won an award in Reflections contest in photography. This girl continues to impress me everyday.
*Lastly and most importantly is that Emma is still here with us and will be 3 in March! This year was really heartbreaking for our Lissencephaly community. We lost a lot of warriors this year, some I only knew from a few posts here or there on facebook, some I created a a real friendship with their mom and talked with them weekly if not daily, and then one I actually met and held in my arms. Losing a child is something that should never happen, as I watch these families lose their precious children my heart hurts for them as they are living my biggest fear. Attending a funeral of a child who has passed and has the same diagnosis as your daughter is......well lets just say tears for days (and still now as I type this). I just hold Emma and cry praying she will not be next and that we can defy the odds and live a long and happy life. Reality can be hard but so can living in fear, so we choose to live in the now. Don't get me wring sometimes that "now" can be sitting on the couch crying but it can also be cherishing every moment and creating incredible memories.
Through all the ups and downs this year I have to say we ended on an UP!
Dec 6-12 we were able to take the trip of a lifetime to DisneyWorld and stay at Give Kids The World thanks to Make-A-Wish Utah. we had the most incredible time. Emma's seizures started to get controlled about 2 weeks prior to this trip the timing couldn't have worked out any better.
Praying for less seizures in 2018!
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