Tuesday, January 19, 2010

January 19

Having a two, almost three year old and an 8month old is hard work. Three year old's like to get into things, like to test the waters and boundaries. This particular three year old likes to bite and when she is frustrated sometimes reverts to head-butting. I can't help but react to these behaviors in a way that I think most parents would. Sometimes I physically remove her from a situation and firmly tell her what she did was wrong. When I'm dealing with a teething/fussy baby and a bag of chips gets spilled on the floor I can't help but get angry and raise my voice. Today Livia bit me, and this is not typical behavior from her. I hate to say that Jake is the one that she tends to bite and be more aggressive towards. When Liv bit me I was so shocked, and hurt, that I swatted her mouth. Not hard, but enough that it shocked her and she cried. All day today I've felt like every time I'd get after her, and she never really did anything real bad, but I'd feel extremely guilty for disciplining her. I know that in the back of my mind I'm thinking......please don't remember me like this. Don't let this "good time" in your life be memories of your mommy getting mad at you. As I write this I feel really stupid about having these thoughts. We hardly ever have days like today. Most days are spent laughing and having a good time. We did laugh today, but I was in a bad spot all day. One of my biggest fears is that one day I'm going to look back and have regrets. I desperately want to make Livia's and Finley's life precious, meaningful, important and memorable. How do I find the balance and not feel guilty when I have to discipline Livia? I know this phase will pass when Finley isn't so needy, but I don't want her baby phase to end. I desperately want to hold on to this time. I think this is why I have my bad days. My mind and my needs go so back and forth. Having this helpless and out of control feeling is a bad emotion to have.

I miss my family terribly. I miss my friends that I don't get to see. I even miss my friends that have chosen to step out of my life. This pains me so bad. I wonder so often how it can be so easy to just ignore. I cry about it more than I'd like to admit. However, it fuels my fight and ironically gives me inspiration.

I needed my mom so bad today. I desperately wanted just time with her. No kids, no husbands, just her and I. I can't even remember when the last time just the two of us had time together. I have a special relationship with both of my parents. I view them with so much respect, yet since they got divorced they are different people. They are still my mom and dad, but its taken time for me to learn how to handle a divorce as an adult. I see them differently than I did when I was a kid. Not bad, just different. I know them differently now. I love them both so much and want nothing more than for them to be happy. OK, how did I get off on this subject? I love you mom and dad. I miss you and Audra so much it hurts. I miss our family. Some of my best childhood memories are 4th street and the farm.

Ultimately I know tomorrow will be a better day. I can reflect on today and learn what I don't want to do tomorrow.

Yesterday is but a dream, tomorrow but a vision.
But today well lived makes every yesterday a dream of happiness,
and every tomorrow a vision of hope.

Indian Proverb

Monday, January 11, 2010

Just one day...........at a time

We went to Children's Memorial today to meet Dr. Burton. When we first got Livia's diagnosis, the MPS society had recommended we see her. After the Disney conference, Jake and I decided that we needed to go see her because we are Livia's only advocates and we have to do what is best for her. We need to be on a course. Dr. Burton has mapped out a course that we feel good about. We didn't really learn anything new, but we do feel like we are a part of a team that is going to get things done.

I can't help but be really sad right now. I had such a positive attitude this morning about our appointment. I had a feeling that we were going to go see her and she was going to give us something new or by some miracle tell us that Livia was OK and some horrible mistake was made. I now think about that feeling and realize how silly I was to think that way. I'm not in denial about this diagnosis, its just that I want so bad to take it away.

Livia is such a trooper. Our apt. was at 1pm, nap time. She was a little grumpy with Dr. Burton, she just didn't want her belly poked. Dr. Burton kept telling Livia how pretty she was and that she LOVED her hair. I really like Dr. Burton. She was very positive and had a great southern accent! She answered our questions and mapped out a course that Jake and I feel good about.

Finley is also a little trooper. She was so good and slept comfortably in her daddy's arms while we talked with the Dr. I hope one day she knows just how important she is in all of this. We are so lucky to have her, she really is a miracle. I have to figure out how to keep life "normal" for her. I have to make sure she feels special and important. We are going to have so many issues to deal with with Liv. I pray that Finley is patient. I pray that she is happy and loves her life.

It's not often that I want the day to end. My grandma once said to me that she thought the days were long for me. They aren't. The days go by so fast, and I often dread the night and dread going to sleep. Not today. I'm ready for tomorrow to be here. I'm ready to start a new day with the hope that I can find it within myself that positive person I desire to be. I need to get on that treadmill and run this pain away. I hope tomorrow I find inspiration and strength. I take it just one day at a time, tomorrow will be a good day............that is my goal.

Wednesday, January 6, 2010


Our dear friends Stefanie and Justin sent us a new Devotional that Jake and I started Jan. 1st. The title of the devotional is "Streams in the Desert" by L.B. Cowman. Tonight's devotional hit home for me. It was a reminder that we must have a living grace in order to do life's work and calling.
I have a hard time putting aside thinking about our future. This can impact me in bad ways. It can consume my thoughts and make me worry about unknowns. I know I shouldn't do this. No one knows what their future holds. Another friend of mine who has a child with MPS just emailed me and said something that I already knew, but brought my attention back to this. MPS affects everyone differently. Who knows, a treatment or maybe even a cure could come along in Livia's life. This devotional reminded me that no matter what goes on in my life, God will be there for me and my family and He will lead us down the right path.

"When you pass through the waters"
Deep the waves may be and cold,
But Jehovah is our refuge,
And His promise is our hold;
For the Lord Himself has said it,
He, the faithful God and true:
"When you come to the waters
You will not go down, BUT THROUGH."

Seas of sorrow, seas of trial,
Bitter anguish, fiercest pain,
Rolling surges of temptation
Sweeping over heart and brain-
They will never overflow us
For we know His word is true;
All His waves and all His billows
He will lead us safely THROUGH.

Threatening breakers of destruction,
Doubt's insidious undertow,
Will not sink us, will not drag us
Out to ocean depths of woe;
For His promise will sustain us,
Praise the Lord, whose Word is true!
We will not go down, or under,
For He says, "You will pass THROUGH."
Annie Johnson Flint

I hope we can pass through this with our heads held high. I hope we can sustain this pain and unknown with the trust that we will not sink. My hope is something that inspires me to make it through each and every day.

I love you Livia, I love you Finley..................both of you have brought so much love into my heart it hurts. You both have created a new life for me. I wouldn't trade this life for anything. Having the two of you is a dream come true. Not only is it a dream come true, but you have helped create new dreams. Through all of this we are going to do good.

Sunday, January 3, 2010


Livia's diagnosis has created a new life for us. A life that has opened our eyes WIDE open. It has also brought many opportunities. These opportunities have ranged from small moments to big trips like going to Disney, to newspaper articles, to barn quilts, to prayer blankets and dolls, to meeting new and amazing people and to opening our hearts to this world we live in.

Disney was such a whirlwind of emotions. I was so incredibly nervous about this trip. I wanted to go so bad because I wanted all the info I could get. I wanted to meet some of the people face to face that I had been corresponding with over email and phone. The nerves came in knowing that we would see children in later stages of this disorder, and I didn't know how I was going to handle it. I didn't know how I was going to simply address these kids. We got to Disney on a Tuesday. We met our wonderful friend John who lives in Tampa for dinner Tue. evening. It seemed like every child that walked or strolled by me I was looking at wondering if they were affected by MPS. I wanted so badly to "put it away" and just enjoy my time with my family at Disney, but we were there because of MPS and we were there to become aware. It was so much fun to watch Liv in an environment like Disney. She didn't have to be in a car seat in any of the buses, shuttles, etc. She really enjoyed that freedom! We went to Magic Kingdom on Wednesday and Animal Kingdom on Thursday. Thursday evening our reality was thrown right in our face. Thank goodness we were with Stef and Jut during this "breakout session." We had started seeing children around the resort, but didn't know exactly how they were affected. During this breakout session, all the different types of MPS went to their designated rooms for a meet and greet and to ask questions. The four of us, all newly diagnosed, walked into this room with families whose children has a terminal non curable disorder. Talk about nerves. We chose to sit behind a family that has a daughter and a son both affected in the late stages who are both wheelchair bound. There were children in all different stages. We heard questions and answers about things we probably weren't ready to hear. We heard about people's situations that are far off worse than ours. Jake had a hard time and had to excuse himself from the session. We just ended up leaving and finding our girls and moms and enjoyed Mickey's Magical Christmas. I often wonder how I don't go crazy with these up and down, in and out emotions. Writing this I can't help but snicker that I was at one of the happiest places on earth talking about our dying children. Friday was my birthday and our all day conference. Mom and Cindy, bless their hearts, took the girls for us and stayed at the resort while Jake and I were at the conference. I left the conference a couple times to feed Finley. It always worked out that I left during a break or during a session that I really didn't need to be at. We did learn a lot, and my science brain kicked on and I learned some really interesting things. We also learned that money rules the world and we are in a waiting game. Clinical trials for MPS II are starting within months, and if all goes well and good results occur then they will start trials for MPS III A specifically. I'm hopeful for this and can only hold onto that to get me through this. I want to say that meeting some of the MPS III kids that are in the middle and late stages I had somewhat of a peace about it. I talked to them, held their hands, and showed them the respect that I would want someone to show my daughter. I wanted to scoop all of them up and make everything better for them. Friday evening was a great dinner with the moms and then Jake and I met up with Stef and Jut for a night out at down town Disney. Saturday was our departure day. I am glad that we went. I'm so thankful for the families that we got to meet. There are some AMAZING people out there who have encouraged me and fueled my fight. I feel better being home and getting back into our routine. I'm aware of MPS every single day. But it's different when we are in Hubert world. Livia is such a bright spot in my world. She is an amazing child that has brought opportunities to my life that I didn't even know were out there. We've made life long friendships that are to be cherished. I've become a stronger person not only mindfully, but spiritually and even physically.

I have to thank my mom and Cindy for going on this trip with us. It would have been very difficult without their help. It was also really nice to make memories with them and enjoy the fun aspects of the trip. I also have to thank everyone that helped us financially with this trip. We could not have gotten to this conference without help. Everyone that chose to help us were very generous and loving. Thank you from the bottom of my heart.