I look at my life and the productivity that I’m able to accomplish in a day. I have a great routine with the kids, and I thrive on that. There are some days when I am so ready to face anything. I can feel a strength from within that is so fierce. I’m ready to fill out forms, make phone calls, work on the Foundation, learn about managing the website, plan fundraisers, play with the kids, exercise and cook! This is the short version of “to-do’s.” Then there are other days, which I feel, are out-numbering the latter. These are the days when I stare at my “to-do’s” and I run from them. I feel so overwhelmed with LIFE that I just turn the other way. I think I can justify this because it’s denial. When I have the forms, the website, the emails, the fundraisers so on and so forth, it’s all in my face. It stirs up MPS when all I want to do is hide from it. I often wonder if it would be better not knowing. Not having to look at my precious child that I hold so close to my heart and know that she is dying. We started the foundation in hopes of raising awareness, raising money for research, and to just have something to work towards. I felt like having this and trying to make a difference would be better than just sitting back and having nothing. I wonder. I honestly just feel overwhelmed with everything. I don’t know how to do it all and do it gracefully. Where do I get the strength to face everyday? I need a balance and I think I really need help. As you’ve read in previous posts, I struggle with asking for help. For one, I don’t want to bring people down. Another, I don’t want to interrupt other people’s lives. And all of a sudden, the strength comes. It comes because I know in order for anything to be successful, you must find the motivation and the strength in your own heart to just get it done. I find the strength because I’m Livia’s voice. I’m her only advocate (Jake, too!) and this is all for her and the other children fighting for their lives.
OK, I kinda got off track of what I really wanted to say. I try to title the blogs with what my message is about. So far, it’s not about a miracle. 🙂 Jake often talks to me about when our miracle is going to come. He and I both feel like a miracle will come in Livia’s life. Will it be in time to save her? I’m not sure. I honestly feel like she and others around her age will be the first one’s, or just miss it. What I mean by this is some sort of treatment, most likely ERT (enzyme replacement therapy). We learned in the middle of the summer that they are starting an ERT for children with MPS IIIA in the UK and the Netherlands. We were on board and researching what it would take to migrate to Manchester, England. Our genetic counselor guided me with the phone calls, names of Dr.’s and hospitals, etc. We knew one way or another we would be going to the UK. A glimmer of hope only to be let down. After lot’s of research and phone calls, we were told that they were only taking 15 children for the trial and only children in the UK. What about us? They felt like they could get that many children, no problem. I was advised by Livia’s genetic counselor not to give up. Keep calling, keep trying. This is very hopeful news for the lives of children with MPS. If it is successful in the UK, it will come to the US. However, that means FDA approval and who knows what else to make it all ok here. I was told that they are hopeful for US trials as early as 2012. Let’s keep our finger’s crossed and prayers going!
As I think about it, these two topics really can be tied together. This hopeful news of a “miracle” really should be what fuels my strength. Why wouldn’t I come out from hiding to try to make a difference in this process. Not to mention, to make a difference for my daughter in general.
Proverbs 3:5-6
Trust in the LORD with all your heart, and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.