No Words

I really did not know what to title this blog, so I left it as "No Words". My worries and fears about Luke have really gone away. Well, they had gone away. He is not feeling well. He is running a bit of a fever and is extremely congested- again! I get so frustrated about his health. Every other month we are having to deal with medicine, doctor's appointments, and his humidifier. It is so different with him. Sydney and Gracie stay pretty healthy. Even when sick, I have not worried about them. With Luke, I feel this great fear creep into my mind. The "what ifs" tend to just get me all worked up. The Bible says that God has not given us a spirit of fear, but of power, love, and a sound mind. I quote that scripture to myself all the time. It still doesn't change the fact that I would be traumatized if something bad happened to Luke. I guess I just need to get over the fear.

Christmas is 3 days away. I hate that Luke does not interact like other children. He sometimes doesn't even participate in his own life. He is in some other world 75% of the time. So, 5 out of 6 people in my family unit will really experience Christmas. Luke will participate as much as he can. I would so love to see his eyes glow with excitement. I would love to see him walk to the Christmas tree. I would love to hear him say "Mama". For now, an occassional smile will do, but oh how my heart wants more! To know that my little boys knows me and wants me would be the greatest Christmas present I could ever receive.

The Echo

Luke had an Echocardiogram a couple weeks ago. It showed that he has a "tiny" hole in his heart. It is something that corrects itself in the growing process most of the time. So, there is no real worry. They are just going to watch it and make sure that it heals.

Next up- the genetic study at Shands in Gainesville, FL in late March 2009.

A First

During our time in Georgia, Luke really began to reach out to me. He smiled when he heard my voice and even made some brief eye contact. A miracle occurred during this time. Well, it is a miracle in my world. I was laying on the floor in my in-law's living room. Luke was several feet away in his own little world. A couple minutes after I laid down on the floor, Luke began scooting towards me. He was looking straight at me and trying his hardest to get to me. Once he arrived by my side, he grabbed my shirt and pulled his face into my chest. He was laughing and trying to pull up on me. He was actually reaching out to me and wanting only me. It was the best single moment I have experienced since Luke's birth. It was in that moment that I knew that Luke knows me and wants me. I cannot explain how wonderful it made me feel. It was truly a miracle- a much needed miracle.

Progress

We are in Georgia right now. We have been here for 4 days now. I love Georgia! It is peaceful and beautiful. We are staying with Marty's parents. It is truly wonderful to be here.

Luke has been really active over the past couple of days. He has been babbling and moving around like crazy. Last night, he got on his elbows and knees and started almost crawling. It was awesome! I tried to get a picture, but every time I would click the camera, Luke would go flat. I am so thankful that I am seeing progress with Luke. He is such a great little boy! He has been laughing and playing. He has even been interacting with his grandparents. I am proud of my little boy- he is working hard :)

So Thankful

I am so thankful that I have my family and that I have my God! I am not sure how I would get through life's trials without them.

God knew what He was doing when he gave me a mother who is so strong and has faith like no other woman I know. I strive to be like her. If I could have half the faith and half the strength she has, I would be just fine. I don't think my mother truly understands how much I admire her. Every day she does something for me. She emails me and encourages me. She sees something in a store that she thinks I might like and she buys it for me, hoping that it will make my day. The love she has for me is so unconditional. For that, I am eternally grateful.

My step-father is equal in strength. He is such a good man. I am proud to call him dad. He has been patient and kind. He also loves me unconditionally. I don't know if I deserve the love he has given me, but I am so thankful for it! He is wonderful with my children and so very giving. Having him as an example has made me want to be a better person.

I strive to be a parent like my parents are.

I am also so very thankful for my husband. A little over two years ago, he chose to marry me and be a step father to my children. He is a passionate father. He looks out for the best interest of his children. They are blessed to have him. We are still trying to blend our family... we still have a road ahead of us. I pray that God bring us closer together through our diversity and not further apart.

I am so thankful that I have a merciful and forgiving God. He loves me no matter what I have done. I am proud to bring my family to church and I am hopeful that all of my children will know Jesus at the earliest moment. My oldest daughter, Sydney, asked Jesus into her heart on July 16th this year. I was not sure that she truly understands what she did, but I have found that she does know. She prays every day. She writes about God. She tells me that she loves Jesus. I am a proud Momma because I know that she is building a foundation. God will always be by her side.

I have a wonderful family. Each person is so unique and special. I am a very blessed lady!!!

A Day in the Life of Luke

This is Luke's usual schedule during the week...

6:15am- wake up
6:30am- be carried out the door into the cold wind by Mommy.
6:50am- arrive at the daycare provider's house and immediately demand food.
6:55am- a nice warm bottle with Kepra (seizure med) in it.
7:05am- bottle is finish, I am ready to play for a little while.
7:30am- breakfast (usually consists of fruit and cereal)
8:00am- ready to play again... put me on the floor!
11:30am- lunch
12:00pm- play or nap
3:00pm- snack time!
4:00pm- Mommy's here to get me!
4:30pm- We are back at my house. I get on the floor and play with my toys.
4:45pm- My sister Sydney brushes my hair. I act like I hate it, but I secretly love it!
6:00pm- Dinner
7:00pm- bath time... I have made a mess of myself :) Mommy takes a bath with me and teaches me how to play in the water.
7:30- 8:30pm- Play time and family time.
9:00pm- bed time (I sleep all through the night)

He has such a good time during the day. He loves to play with his toys. He also loves to listen to music. If I sing or play a cd for him, he will stop everything he is doing and listen. I truly believe that he is going to have a gift for some sort of music. I have the sweetest little boy in the world :)

Mixed Emotions

I really feel like I am going through some sort of grieving process. I have gone through all of the same emotions. <> I was, at first, in denial. I did not want to believe that something was wrong. I was seeing "red flags", but I was desperately trying to ignore them. Then, I began to let myself admit what I was seeing. I would only admit it to my mother, though. Admitting it to my mother helped me begin to seek help for what I was seeing. So, testing began. I was like a robot. I did not feel anything. I just knew that testing needed to be done. The EEG came back abnormal and I went into denial again. I thought that if I waited a while, Luke would grow and begin acting normal. All the while, I was feeling sad inside. Then, all of a sudden, I became angry about the situation. This is what led to the last doctor's visit. The anger allowed me to have the strength to be up front with his pediatrician. It also allowed me to be able to hear what she had to say to me. Immediately after the doctor's appointment, I became extremely sad again. Now, I am feeling angry again. At some point, I will accept what is going on and move on. Until I get to that point, I will just continue to walk through each day a small step at a time. Accepting Luke for who he is and what God made him will mean that I will have to let go of some things. It will happen. It is just a matter of time.