Thanks

Well I was lucky enough to go out with some friends tonight and I was so happy. Our new nurse came over and Madi gave her quite a hard time. If I'm around Madi wants nothing to do with her. She told her, "I want to cook dinner with mommy!" She is funny! Getting anything done one handed isn't easy. I feel very comfortable leaving Madi with our nurse already! It is such a joy to have help, even if Madi is reluctant!
One big stressor in my day today was that tomorrow our sitter has a vacation day and for a few weeks I had been planning on a new nurse coming to the house to train and then be here tomorrow. Well, I kept waiting! I called several times to remind them that I needed someone tomorrow. Well today came and she still didn't have anyone! I was very upset and frustrated! The nursing scheduler didn't even call me I had to call them. They finally found someone but I'm not too happy that we have never met the person before. Thank goodness our friend Todd will be home all afternoon too. Madi loves Todd!I am really nervous that this person hasn't met Madi or been to our house before! I am extremely frustrated that these people don't put themselves in my shoes! I am so grateful for the help, but not when it causing me so much stress! Hopefully I can post tomorrow that all was wonderful!
I can't wait for summer to be here so I can be home with my girls! I feel guilty leaving every day! I constantly think I should be spending every minute I get with Madi and pray that God keeps giving me one more day! How do I spread my time equally when I have a handicapped child? I haven't figured that out yet! It is coming down to the end of the school year and stress is taking over! I am very emotional and will probably cry every day now until it is over! I have such a controversy in my conscience! Should I give up all we have and spend time with my beautiful girls or continue life as normal and "pretend" Madi isn't so fragile and give them everything I want to! I just don't know! I do know that I need to continue to pray on it and hopefully God will send me some sort of message to help me figure it all out!
The benefit is this weekend! If you don't know about it you can check out madipokerrun.com I am so lucky to have so many wonderful people in my life! I can't wait to see all of you, those I know, and those I don't. Thanks for all your continued prayers and support! My family is lucky to have you in our lives!

Busy Spring

Well you know things are going well when I don't post for awhile. We have had a very busy spring so far! May is keeping us on our toes! We are so excited to have begun nursing services for Madison. We have now qualified to receive some respite and nursing hours every week. We just started last week, so we are still trying to figure out the schedule. We started with one nurse, who is fabulous but we will be training a few so that we have back ups. The nurse comes to the house and helps Madi with therapy types of things. She helps Madi with the parrallel bars, does foot exercises, does some respiratory therapy type of stuff with her, gives her a bath, and plays. This is such a huge help for me! Especially on baseball nights. When Morgan plays baseball there is no where for Madi to play. She still doesn't like to stay in her wheelchair for extended periods of time, she hasn't quite figured out the standing dani, and she wants to be held all the time. It is frustrating. I am hoping that having a nurse there will help with figuring out the standing dani. We use it everyday to go down the driveway and get the mail. She doesn't know how to steer yet and is quite dangerous in that thing. I hope she learns. It is such a great piece of equipment that will help her be able to play more and be more independent. She just gets frustrated so quickly. She is such a little independent 3 yr old. She doesn't want help with anything and so she gets mad when I try to help her steer or stop her from running me over.
She still loves school. Her teachers are absolutely fabulous! She is talking up a storm, can count to 12 and sings her ABC'S all the time! She is so funny. Okay, funny story! I had all the girls in bed and it was getting late, like 9:00. I was reading Molly a story in her room and Madi has been quiet and I thought she was sleeping. All of the sudden we hear her yell, "Molly McButterbutt!" We all started cracking up! The babysitter's husband calls Molly that! Thanks Tim! Then she continued for about 10 minutes because we were all laughing at her. She loves a good laugh! She is so silly these days! I thank God every day that I see her smile! I will try and post some recent pictures late on tonight! Please keep some of our SMA friends in your prayers for I know at least one who has become an angel this week!
We are really looking forward to attending the annual SMA conference in Ohio this summer. It gives us a chance to feel "normal" for a few days. I can't wait to let my emotions go this year. Last year it was all so new and shocking to us. I hope I can be a little bit of a shoulder for another family to lean on this year. I'm really wanting to get Madi involved in something other than therapy. If anyone has any ideas I would love to hear them. I feel bad, Molly and Morgan have baseball and tumbling, and Madi just goes to therapy 2-3 times a week. I have been a little more emotional lately when I'm out in public and people stare. I guess because Madi is growing so much and looking older people stare more. I find myself staring at all normal 2 and 3 year olds lately and think about how unfair it is. But God would not have given me a cross to bear if he didn't think we could handle it. SMA is our cross. I have met so many wonderful people and been filled with the kindness from lots of family and friends. Thanks to all of you who actually read this and listen to me complaining. Sometimes it is my only outlet because I don't want to call and complain to people. I hope to see all of you at Madi's benefit on May 23rd. It begins at Overtime and is a pokerrun. It will be fun!