February, 2012 CHD Awareness Month

As this year begins, I look back on 2011 and am so grateful for all that we have been through! When we think of CHD's... you would think that we would only be able to focus on all the tradgedies of this diagnosis... but that is not the case! We concentrate on the HOPE that our children have shown us... we think of the accomplishments and celebrations we have seen. Our Jilly is now 5yrs. old, and she has had 5 open heart surgeries, with more to come and yet what is most important is the grace she has shown through all she has been through. Each year, each day, each moment is a blessing from God... he has given us these things! God created these children with CHD's for a reason... not for pain and sorrow but for Joy and Hope. HE has sent us a piece of Heaven, to love and to hold. Each of them, with a different journey, each with a different length to their lives... but each, to live or to leave a legacy for others to be blessed by.
Jilly has overcome so many things in the past year... suffering brain injury in Nov. of 2010 was the beginning of a new day, a new way of life. Yes, we mourned the losses that day but the next day we celebrated life, we celebrated the doctors who saved Jilly's life, and we celebrated God, who directed the doctors on how to extend this precious gift of life for Jilly!
One day at a time, we worked towards our goal: to be Jesus' sunbeam... whatever that may mean. For Jilly, it has meant for her to shine in her developing skills. To learn and to grow, to strengthen and to develop. Jilly is now working towards going to kindergarten in the Fall. Jilly regained her ability to use her body, to sit and to walk, and to do the fine motor skills needed in life.
Things may not be exactly what they could of been without the brain injuries in her life... but they are exactly what God meant them to be, and we are so grateful for her and her accomplisments!
Jilly wakes up each morning with a smile on her face! If you say the word doctor or show her pictures of medical things... she points to herself and says "ME"... WITH A SMILE... if you say to her, yes you have doctors, she points to her scar on her chest and says "ME", and she smiles some more. We tell her that is where the doctors went in to work on her heart, she smiles and goes and gets her stethescope. She listens to her own heartbeat, then she checks to make sure ours is ok too.
So 5yrs of living with a CHD, has not defined Jilly... rather 5yrs. of living with LOVE... that is what she knows. 5 yrs. of God protecting her, 5yrs. of mommy and daddy protecting her, 5yrs of her big brother making her laugh. 5yrs. of happiness... that is what 5yrs. with a CHD has been like for us.
Jilly does not remember the hard times, we do... but they are a distant memory. We know there will be more, and we pray for Jilly to overcome these hardships and move on through the rest of her life, with the Grace, and Elegance that she has done so far.
I am grateful for this journey,it may not seem perfect in most people's eyes... but it it perfectly ours, and I rejoice in our journey and the opportunity to share our Jilly with others... teaching them the true meaning of God's Grace for us.
My biggest desire, is for other families to know... that CHD's are survivable. That knowing about these heart defects prior to birth is the utmost important issue. So that these children can be cared for properly and timely. Secondly, I hope for each family who travels this journey, to have the kind of support we have received from the Heart Community, and all those who decided to join the support from the love and kindness of their hearts.
CHD's do not have to paint an ugly picture... just look at these children, they are beautiful and their surgeries do not define who they are. They are just precious little souls, here to experience love in this world as all children should!!!
I thank God, for our Jilly Rose... her beauty, her personality, her giggle... brightens each and every one of our days!!! Therefore, I thank God for CHD'S!!!