{it is best to be}
“It is best to be honest and truthful, to make the most of what we have, to be happy with simple pleasures, and to be cheerful and have courage when things go wrong.”
-Laura Ingalls Wilder
I have this lovely quote hanging in my house. I walk by it everyday and I always glance at it and say it to myself. I had this quote hanging up before we got Livia’s diagnosis and it’s something that I appreciated but didn’t really whole heatedly live by…………..until now. Honesty is something that will get all of us farther in life. Whether it’s just simply telling the truth, being honest with ourselves about our own happiness, admitting what’s on our minds, asking for help, etc. etc. saying it out loud is the hard part. In my experience, when I get something off my chest that’s been bothering me, I feel better when I just say it. This past year I’ve been struggling with being honest about my feelings. It’s hard to express and be honest about my thoughts. I don’t want to burden anyone or bring anyone down. I think that’s one reason this blog has been such a blessing for me. I feel like I can be completely honest here and just say what I need to say. So, here goes with being completely honest and admitting something that is hard to say out loud. I’m starting to recognize that my world is divided and probably will be divided for quite some time. I have one foot in a “special needs” world, and one foot in a “normal” world. I’m becoming more aware of this because Finley is changing so much and communicating so well. Livia is doing really well and using more words all the time, but it’s different. I struggle so much with wanting so bad to have a conversation with Livia. I want to hear what she’s thinking. Finley is already responding to us with a few words and telling us what she wants. Livia really didn’t start talking until she was close to 2. I’ve also come to a realization that it hasn’t been until just recently that I feel like I’ve bonded with Finley. This is so hard to say out loud. Unfortunately, this past year has been consumed with devastation, coping, learning, and finding a way to just do something to fight MPS. Livia’s diagnosis came when Finley was 8 weeks old. What I remember the most of her infancy is sitting on the couch with her scared to death that she might be affected and watching Livia play thinking about this awful disease she is affected with. I feel so bad that Finley’s first year was clouded with MPS. I know I shouldn’t feel bad, but I do. This is another example of having one foot in one world, and one foot in the other world. I have to find a balance and not feel guilty about anything. After all, Jake and I are doing our best to do whatever is needed for both of our girls. I also have to say that I know I’m lucky to be in both of these worlds. You think I’m crazy for saying that? I don’t. Sanfilippo is going to help us be better people. Sanfilippo is going to help this “normal world” put what Laura Ingalls Wilder said in her quote into action.
I’ve gotten in the habit of starting a blog and having to walk away for one reason or another. Be it dirty diaper, having to clear my thoughts or wipe away tears, I haven’t typed a blog in one sitting for awhile. We were just on vacation in Minnesota with Jake’s family this past week. It was nice to get away and be together. We enjoyed the days with swimming in the lake, fishing, boating/tubing, playing games, camp fire, good food and drinks and even running on occasion! While we were in Brainerd, Mn we hit the one year diagnosis day. It was a hard morning for me because I kept re-playing that day and the surrounding days that occurred one year ago. It was haunting. I cried with Jake. I called my mom and cried with her for a bit. I gave Livia a hug and told her how much I loved her and how proud I was to be her mommy. I re-gained my strength from her loving ways and enjoyed the rest of the day. I actually spent most of the day on the lake tubing. It was a good distraction.
Another situation to report that is one to mark down for the record blog………….This past Saturday at the Roscoe Rush football game, a lady who is the mother of the owner of Texas Roadhouse in Rockford introduced herself to us. Texas Roadhouse is providing peanuts for us to sell at the games. We get 100% of the profit. It’s very generous of them! Anyway, I hate that I can’t remember her name, but she read the print out about Livia that we have on the donation bucket. After reading it she took my hand and told me that being a mother is the biggest and best blessing that anyone could have. That God is good and good things will come our way. She was so sincere and loving………..I instantly started crying. What she said next really hit home and it’s something that I will always remember. She told me that worrying is an insult to God. I appreciate her words so much. I told Jake that that situation means more than someone throwing a dollar in the bucket and just walking away. Not that I don’t appreciate every dollar we get, because I do. It’s what we’re working towards in order to help find a cure. It just means so much to know people’s heart and to know they care and love us. Thank you for being so honest with me.
Matthew 6:25-27, “Therefore, I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your Heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?”