*****I apologize in advance if this blog post seems scattered…random….etc. I have been so busy living life that I have had trouble writing the words that I thought were fitting to sum up CHD Week and how I feel as a CHD mom at the moment. Anyways, here it is….
CHD Awareness Week 2014 is officially over, but our job as “heart parents” is far from over. No, I will not be bombarding my Facebook page every day with CHD facts and statistics, nor will I be arranging big events, attending proclamation requests, doing radio interviews, or asking all of you to participate by wearing red or changing your profile picture to Miss Emma. However, I live with CHD every day, so really my mission to educate, and drive to keep her alive is a daily task that I perform with pride.
CHD Awareness week reminds us to take a step back and focus on what makes Emma unique….what turned our life upside down….what makes us advocate for more research and better outcomes. It allows us to educate our local community on what CHDs are and how to recognize signs and symptoms in newborns. It reminds us how blessed and supported we are by family, friends, and acquaintances. It unifies us with local and national support groups and other heart heroes who are all pausing for a week to remember those who are living with CHDs and honor those who have lost the fight.
So, I thank each and everyone of you for participating in CHD Awareness Week 2014…. for wearing red, posting facts/statistics, donating to CHD awareness groups, changing your profile picture to Emma or another heart hero, and most importantly for praying for Emma. I encourage you to donate blood, register as an organ donor, and continue to remember all of these precious children that fight CHD with every heartbeat.
Now to my feelings right now on living with a child with a CHD:
Balance. We all struggle with balance in our lives, but when discussing Emma it is a constant struggle with balance. I do not want Emma to be solely defined by her CHD, but in reality her CHD has created a life for her that is different from the norm. But you see, she doesn’t know she is different. She doesn’t realize she is behind or that her life shouldn’t revolve around multiple therapists a day, a feeding tube down her nose, oxygen at bedtime, multiple meds a day, braces to stabilize her ankles, etc.
I watch her fight every day to overcome obstacles that most children her age conquered two years ago. She huffs and puffs just pulling herself up on the couch….she gets frustrated when she cannot communicate her wants/needs or go get something she wants.
Balance….but I want her to experience normal. I want her to attend Bible class, hang out with family, make friends, go to the movies, go out to eat, visit parks, zoos, museums, etc. Honestly, who doesn’t want “normal” for their child? That’s what makes living with CHD so difficult….Balance. How much do I expose her to during viral season? What if I am exposed to RSV, the flu, the stomach bug and accidentally pass it on to her? For example, the other day Scott and I were at an event and the person sitting behind us was coughing and sniffling the entire time. I really had a hard time concentrating on the event because I was worrying about germs were infesting me. ;) Balance…..letting go and understanding that while it is okay to be smart and careful, it is not okay to not give Emma the chance to live, grow, and experience life.
Truly, God has given us an amazing gift. Emma smiles through her struggles...she laughs off the pain and she is a constant reminder of the love God has for us. We are not promised a life without pain, tears, and even heartache, but we are promised an abundant life of Joy if we turn our life over to Him that gives us life...if we follow Him. This world is not my home...but I will praise Him in the storms! So we continue to find balance in our life, happiness around every corner, and giving our God thanks for every second of every day. God is good...all the time. And all the time... God is good!