Today as a gift

Here it is again, the Great reversal: many of the first ending up last, and the last first.
-Matthew 20:16

Makayla was diagnosed with CHARGE syndrome in August of 2013.  From the day she was born we knew something was wrong, we spent 5 days in the hospital doing many tests.  Not many people know very much about CHARGE, research is happening but slowly and new symptoms seem to pop up daily.

CHARGE  is an acronym which stands for:
C-  coloboma
H-  heart defect
A-  atresia choanae (also known as choanal atresia)
R-  retarded growth and development
G-  genital abnormality
E-   ear abnormality

Makayla's specific sypmtoms are; Heart defect (Coartation of the Aorta), atresia choanae (blockage in one side of her nose), ear abnormality (cup shaped, rotated, lowered, moderate to severe hearing loss in both ears) swallowing difficulties and airway issues.  She has other sypmtoms which don't coincide with CHARGE such as a small jaw and extra fluid on her brain.  Children with a diagnosis of CHARGE syndrome have a 70% survival rate to the age of 5 years. The percentage decreases significantly with heart defects and airway anomalies.

Which brings me to the point of my post. We see on the news frequently about children, without life threatening diagnosis, that pass away due to parents, babysitters or siblings taking the childs life for granted. Children that could otherwise live a long, healthy, beautiful life.  Before I had the honor of having the opportunity to be Makayla's mother, I never thought a day would come that I would need to excersise the saying, live everyday to the fullest, you never know when it will be your last.

My daughter has to fight to live and breathe every single day.  Even with everything she goes through, there is hardly ever a time that she isn't smiling. She is so happy all the time, to the point that her brother and sister beg to be around her, touching her, holding her, wanting to help with her cares.  My children, all three of them, have already, perhaps before their time, learned how to embrace my favorite of sayings, "Today is a gift, that's why they call it a present." I don't know how many more "gifts" or days I will get with my children, but I vow to take advantage of each and every second of them. I challenge you all to do the same.

Think of it this way, if your child or spouse or special someone were to be gone tomorrow, what would you be upset about the most? Not enough pictures, memories, smiles, kisses, hugs, candy dinners, tents made with the kitchen table, movie nights, staying up late, reading books to them.  The list is endless, don't go to bed tonight with regrets.

MAKE EACH DAY COUNT! - Leonardo Dicaprio (Titanic)