Caitlin is a 26-year-old young lady from Plano, Texas who loves walks outside with the dogs, watching Disney movies, and listening to music. She truly is an angel and everyone who meets her falls in love with her.
Caitlin was born with an EXTREMELY rare syndrome called Aicardi Syndrome. The doctors told us her life expectancy would be around 3 years of age, but God clearly had another plan. Caitlin is 100% dependent on us. She has a trach, G-button, suprapubic tube, seizures and apnea (must be on a vent at night). She is also non-verbal, blind in her left eye and cannot walk or talk. Even though she has all of these challenges, Caitlin is the happiest and most loved child ever! Our sweet gal has brought so much LOVE to so many. God is so good and even amongst all these circumstances He still protects her and those around her. We are so grateful.
Most of all, Caitlin LOVES to be with her family and friends. She especially enjoys listening to people having conversations. We never know how much she understands, but she clearly engages and listens. She loves having people pay attention to her; getting hugs and kisses is the BEST! Caitlin also enjoys her favorite PBS shows, all Disney movies (of course) and riding in her handicapped accessible van especially when her mom hits bumps in the road!
Caitlin is blessed to have her mom, dad, younger brother, grandmother and local family nearby and most importantly our amazing nurses! We could not do it without them (both mom and dad work fulltime outside of the home). I know this is not always the case with all special needs families.
It is a blessing that Caitlin does not really comprehend what her parents and nurses have to go through on a daily basis. She is well protected and enjoys life to the fullest. On the other hand, her parents deal with insurance denials, nursing agency shortages, battles to get supplies and medications approved, various disappointments, and 100 other setbacks daily. It is just what comes with the territory when you have such a severely handicapped child. We are grateful however, that God is in charge and that overall Caitlin rarely gets ill. When she does unfortunately it is always severe and means 1-2 week stay in the ICU.
Caitlin is the toughest girl I know. She has an incredible tolerance to pain, and snaps back from major illnesses quickly. We believe she has nine lives! In the first 6 years of her life, we were always in the hospital trying to figure out what most doctors never could. Where could all of these medical challenges be coming from and why they were causing such havoc? As she got older, things started to smooth out and her disabilities became more manageable. Pulmonary, seizures and urology were the biggest challenges.
You have to be tough and fight for everything for your child. Never give up! It is not an easy life, I assure you. There are many times you just want to scream and it can get ugly, but you just need to keep your eyes on the Lord and keep praying, even when you feel you can’t do it anymore. It’s all worth it for the joy of coming home from work and looking at her beautiful face and smile. No matter what happened to me that day or what is going on in my life, that smile will erase all of it!