I’m a frequent Facebooker and find myself having a love/hate relationship with it. I love it so much because I have a “relationship” or friendship with people or family members that I may not otherwise talk to (often). I love how easy it is to catch up with people and how easy it is to let people know what’s going on. I love the network of MPS people. It’s nice to have the resource at my fingertips to get advice or ask questions to other MPS families. It’s also a great way to spread awareness of what’s going on in the life of MPS. On the other hand, I hate it because the personal or real-life feeling is missing. I get virtual hugs often and lots of words of encouragement, but it’s not the same as feeling a hug or hearing the words straight from a friends mouth. It’s hard to see/read about what other MPS children are going through. Not that I don’t care or want to hear, it’s just a little scary and it put’s the reality of MPS back into my life. I’m not going to lie, sometimes it’s easier to just put MPS aside and just enjoy Livia the way she is now. I don’t want to think she may not communicate with me or walk to me one day. I can’t imagine having to discuss a feeding tube or seizure medications. There has been a lot on FB lately regarding MPS. I’m so proud of all the parents that have this amazing energy to do whatever it takes to do SOMETHING to try to save their children’s lives. Foundations are being started left and right. Fundraisers are being planned. Interviews and News appearance’s are happening all in the name of our children. I feel like I’m not doing enough on my end. I wish I had all the time, money and energy to do something amazing. Liv Life is a good start and everything has to start somewhere. I guess I’m just feeling a disconnect from the human aspect of things. If that makes any sense at all. Maybe I’m just feeling sorry for myself and just need to get out of this funk and find some energy to do something.
I think another reason I’ve been a bit down lately is because of how real MPS is feeling now a days. Livia’s chewing has progressed from Barbi’s feet and hands to her own fingers. She still prefers Barbi, but when that isn’t available, it’s her own fingers. I’ve been playing angel/devil with this next one because I don’t want Finley to always be in the world of MPS. What I mean is, Finley is a tremendous blessing and I recognize that every single day. I look at her in a way that I don’t think every parent gets to experience. She is making such great gains and growing so well. She is communicating so well and has even started putting two words together. She’s starting to show interest in potty training which is a big one in my book. This is the start of Finley passing her sister up. This is really hard for me. This is where the angel/devil on the shoulders come into play. I’m so happy and thankful on one side and on the other I’m seeing a sadness in the situation. I have to dig deep today to find my energy and will to do something. I feel like I’m on a teeter-totter all by myself. How do I find a balance. Maybe Liv and Finley together are my balance. I do know one thing for sure……….I’m lucky to have my life, my children and a husband who loves me unconditionally.