TRUTH: I've been avoiding my blog like the plague. Lately, I've been in total denial of Sanfilippo. Livia is doing really well and so I've put everything on the back burner. Liv Life foundation included, but I will get to that a little later. I've gotten the privilege of helping in Liv's classroom a couple times these past months. In the beginning of school when I would go for a visit, she would see me and then cry and cry. Now, she wants to show everything off. She's so proud of her room and teachers. I really love going and helping out. I love to see and hear about her progress. When I hear she is doing something new, I know she isn't regressing at all. I'm scared for the day (if that day ever comes) that I won't hear her precious voice. I love hearing her call for me, sing ABC's or Happy Birthday, call for Finley which comes out Ninny or Sis, ask for the Wiggles, read her favorite books, or just hear her say love you, momma. So, point being; my blog, the foundation, and the paperwork that goes along with ALL of it reminds me of the sad truth of Sanfilippo and that MY daughter has it. I pray about this all the time. I pray for God to show me guidance and to hear his voice as to what direction I need to go with the foundation. I feel so overwhelmed with the foundation. Honestly, I just don't know how to be a mom, a wife, and be an advocate for Liv life. The foundation takes a lot of work. The website alone gives me a stomach ache just thinking about it. I've tried and tried to teach myself how to be a web designer, graphic artiest, etc. etc. It takes HOURS on the computer, just me, trying to figure things out. OK, deep breath. As I type this, read it, re read it, I think to myself.......Kelly, it's better to do something than nothing. Stop complaining. So, here is my idea. If you've read my previous blog posts you know that something I struggle with is asking for help. I came up with this idea on one of my runs (when I come up with my BEST ideas). Form a Liv life council or some sort of board. Put it out there as a volunteer basis. Have meetings once a month or as needed. Tell people you will feed them to get them to your house. This I know I can do! People want to help, right? But what if I get no response, then what? Pray about it. I know that whatever will be will be. If God intends for me and Jake to be the soul runners of Liv life, then we will make it work. If he intends for this to grow like I envision it then it will. I feel like we (our family) is on our way to where we need to be in life. He is showing us people and places that I feel like will open many doors in our future. It is a positive and exciting place to be. More on this subject to come!
So, another reason I fell so moved to dive back into the world of Sanfilippo is because of my beautiful, intelligent, motivated best friend Stefanie Boyce. Every time I see her or talk to her I gain strength and knowledge. She is really an amazing person. She's introduced me to some other beautiful and intelligent woman that make me feel so loved and welcome. I really feel like I'm a part of something so deeply and wonderfully real. Anyway, Stef is working on her own ideas for the world of Sanfilippo. She is so inspiring and motivates me to just do it. Stef also comes to my rescue in my darkest times. She is the friend who calls and will pray with me over the phone. She, because of our situation, just gets it and understands everything I'm feeling when all I can do is cry. She and her family is such a blessing to our family. I thank God everyday for crossing our paths.
Stefanie was at my surprise 30th birthday party. Side note, my hubby is wonderful. He totally surprised me and spoiled me all day. I love you Jakey! So, another way I've been pushing Sanfilippo aside is by not renewing our MPS society membership. We've not been receiving the Courage publication, which I really do miss. By not getting this we've missed the last publication which not only donned the most beautiful Sanfillipo baby, Brooklyn Boyce, but also gave some really promising and exciting news for MPS IIIA. This hope that we hold for our children's future is what gets us through everyday. Whether you have a healthy child or a child with a special need, your desire for them is the same. You want the best for them no matter how many days they have on this earth. I strive for my children to be good, respectful and most of all happy. I want them to learn about our Savior and that our life here on earth is only the beginning. This is what I hold onto and because of that I can LIV each day to the fullest.
All of this said, like everyone I've started thinking about my New Year's resolutions. Here are a few that I've come up with so far.
1. Find the strength to continue with Liv Life and not give up.
2. Not be scared to ask for help when I really need it.
3. Renew MPS society dues.
4. Finish the things I've started (kinda goes with #1, but applies to other things.)
I have more, but I think the list could get crazy. Merry Christmas, Happy New Year to all of you. Remember the TRUE reason for the season and tell your children about it. They will thank you in the future!
Wednesday, December 1, 2010
I was approached yesterday before pilates class by a friend, Ed. He is someone I've come to know through the Y and through running. He is a marathoner and someone I look up to. He came to me with a fund raiser idea for MPS. I instantly started crying and really couldn't express my feelings or words. I feel bad that I started crying like that. I'm not sure how he felt around a bumbling mess like that! I know my feelings came from loneliness, gratitude and excitement. What a mix! There are times when I feel so alone in this journey. Not only being away from family, but when it comes to the website and fund raising it can be very overwhelming. Gratitude because I was so thankful that he was thinking about Livia and MPS. Knowing that someone's wheels were turning about my child during their time was very touching. Excitement because his idea is fun and easy. All in all, it was nice of him to come to me about this. I hope my crying didn't scare him away and I hope the idea works!!! Thanks, Ed for being there and for keeping those wheel's turning!!!