Sometimes I can feel the stress as though it has accumulated over several years. In reality it has only been 12 months, 12 very long months. The lack of sleep, personal time, time with my wife, time with my boys and the company of others makes me feel like a hermit cast into the underbelly of society as I stay imprisoned in my house each and every day. We have had visitors, but they have subsided. We have brief stints of time in which Sophia is being watched, but the time flies by like seconds on a stopwatch. It is almost not even worth the work to get everything ready just to have someone watch Sophia for two hours. Nonetheless, we keep on moving forward doing what is necessary. God has always provided for us someway financially to assist in staying afloat in a sea of accruing medical financial obligations that seams to engulf us and continuously hit us like waves in an ocean one after another taking our breath each time. It is a struggle to maintain when you have to miss work which is unpaid to support your spouse in caring for a child that you know will only regress in health. No I don't want your putty. I am not asking you to feel sad for me. I am only utilizing this blog as a therapeutic outlet and a means of.expressing exactly what having a child.with Batten Disease is like. I hope that it allows you to take into perspective your own life and enables you to cherish the blessings you have as it can always be worse. Believe me I know!
Princess Sophia
My name is Sophia Grace Crawford and I am one year old. I have been diagnosed with Batten Disease, a rare and incurable genetic disease that will cause me to lose the little sight that I have, worsening seizures, loss of the ability to move my arms and legs, and will ultimately leave me bed ridden. And it is always fatal. I will leave this world within the next two years but I don't know exactly when. Until then, my Mommy and Daddy want to help me bring awareness to Batten Disease. Please come on this journey with me so that, together, we can celebrate each day that I have left!
Should be good reminder to us all for so many things we take for granted.It always drives ne nuts to hear people they dont see how do it when dealing witha difficult problem its not like you have a choice. so keep venting you have a great support group (Family) thats chomping at the bit just let them know what you need. Dad.
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