God really does have it all under control, doesn’t He?!? At least when something wonderful happens and you can feel Him wrapped up in the situation, it sure feels that way!
This blog has become an outlet for me. A way for me to get out what otherwise would end up as “verbal diarrhea!” It’s a therapy tool that let’s me express what I’m feeling, what I believe in, and to tell our story. It’s reached people that I probably don’t even know! It’s been passed around and shared, which completely blows my mind. I’m humbled when people say that my words have touched or inspired them. I’m no literature major, and I’m certain my grammar could use some correction.
My blog reached someone that God knew we needed in our lives. I’m constantly writing about Livia and how her life impacts ours. The situations we encounter when it comes to her. The worries I have about her health, her issues, etc. etc. But that’s not my only worry or the only part of our story. My sweet Finley Faith weighss heavy on my heart, A LOT! I worry how this life will impact her in the future. She doesn’t really know the extent of Livia’s issues. Being the “little sister,” this is all she knows. She knows Livia as her sister, and that’s it. She does know that Liv is different and takes extra care and patience. But Finley has always just gone with the flow. She’s helpful, but doesn’t interact or play with Livia because Livia has never done that with her. Finley thinks Livia will grow up. Just the other day she said, “mom, when Livia grows up I really hope she will learn to talk to me and go pee pee on the potty like me!” I fought back the tears, swallowed the lump in my throat and totally avoided the statement by offering Finley a Popsicle. There will never be a right time to tell Finley about Livia, but that day was not it. I find myself praying daily that I’m doing enough for Finley. That she is having a good childhood. It saddens me that she does not have a relationship with Livia like I have with my sister. How will she be when Livia gets worse? These thoughts burden me.
A couple weeks ago I received an email from a lady named Gayle. She introduced herself to me and explained that she received an email from a lady at the Rockford Parent Magazine in regards to the June parent of the month, which just so happens to be my hubby, Jake. The email referenced our story, Sanfilippo Syndrome, and my blog. Gayle then went on to tell me that she read my blog and gained a wonderful perspective 30 some years after she lost her brother to Sanfilippo Syndrome. Whoa! At the end of her message she expressed that she would really like to speak with me and I quote ” If you have any interest at all in connecting, I would love to speak w/you in attempt to offer any support that I can. Even if its from the perspective of being a sibling of someone w/Sanfillipo syndrome.”
I immediately emailed her back. I was not going to let this opportunity pass me by. Texts were exchanged and just this morning, Livia and I had the extreme pleasure of meeting Gayle in person. I knew this was going to be an emotional meeting for both of us. Hugs and tears were exchanged. God calmed my burdened thoughts through this beautiful new friendship that is only hours old. Our conversation was easy and familiar. Sanfilippo Syndrome verbiage is pretty much the same from decades ago. I’m pretty sure Gayle experienced nostalgia being in Livia’s presence. Gayle’s words and encouragement, not to mention all the little similarities we found getting to know each other, were extremely comforting to me. God was completely wrapped up in this. Gayle and her family were placed in our life to offer something. Support for Jake and I, yes. To love Livia, absolutely yes! To love Finley but to also offer a sibling perspective, oh my yes!!!!! If you are open to praying, listening, and obeying, God will show up in His perfect timing…every. single. time.