On a sunny day in July of 2006, Ava was born into our family! She is a gorgeous girl and such a delight! However, upon looking at my sweet girl, you wouldn't think that she is battling a life-threatening disease. For that first two months our world was perfect! We had two gorgeous, healthy girls. Ava was developing and progressing on schedule but in month three she started having "episodes" of seizure activity. At first we thought it was just a tick or that her little system was trying to work out the kinks. But when these episodes started to be consistent, we knew it was time to see the our doctor. We were immediately sent to Primary Children's Medical Center (heaven on earth) and after her little body was put through every scan, test and x-ray known to man, she was diagnosed with Tuberous Sclerosis - a genetic disorder that causes abnormal growths to develop in her body spontaneously. This is a fairly uncommon syndrome and is usually passed down through the genetic lines. However in some cases, and as it turns out with Ava, it is a spontaneous occurrence. The typical human body is born with the gene to ward off any abnormal growths that could occur. TS is the syndrome for those of us that are not born with that gene. Unfortunately, Ava's body is missing that gene and so her body can't fight those growths. For her, these growths (tubers) have primarily presented themselves in her brain. The symptoms of this disease are exhibited through seizures - which are sporadic and spontaneous. Even when medicated, she could seize at any time for any reason. We have had 3 experiences thus far where she was Life-Flighted to the hospital and once where we truly thought we had lost her battle. But alas, my little one is a fighter and is still here to bring us joy everyday! This condition also, and mostly because of her 35-40 tubers in her brain, causes developmental delay and her progression of the "normal" milestones have been slower than most. In fact, it took us until last Christmas to see her walking.. What a Christmas miracle that truly was!! It affects each child differently and we are told that Ava is on the high end of ability. Some children lack the skills to feed themselves, dress themselves, walk, run, crawl, or do most everyday activities that we take for granted. What a blessing it is to us that even though we have this challenge in our lives, she continues to develop as a typical child, just at a slower pace. In fact, this year Ava started Pre-school - she is so very smart and is growing leaps and bounds! Her personality is unfortunately like her mother's - stubborn and defiant but also strong and courageous. And where she is not the typical 4 year old - to me she is not the typical 4 year old for more reasons that her disease. When I look at my daughter, I see a choice spirit of the God who has more strength than most of us. I see a girl whose life has taught me patience, love, understanding, faith and a total reliance of the eternal plan of my Heavenly Father. Ava gives me courage each day. She reminds me that God has a plan and that no matter what trials or heartbreaking events we experience, He is always there to love, guide and comfort us. I do not know how long we will have her in our lives. And though the next seizure episode is somewhere around the corner and we live with that threat each day, we have come to realize that we can handle whatever comes our way. We live each day to the fullest, cherish the memories we have made thus far, and press on no matter what!
So, yes! Today, I am grateful for my darling Ava who brightens up my life. And in those moments of exhaustion and stress, I still wouldn't change a thing. Love is a beautiful thing.
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