An Update

An Update:

Luke is having a great year at his school. He has only missed a few days. His teacher has him walk with his gait trainer every day. He is walking stronger. In fact, when our church had their preschool parade, Luke led the crowd with his church teacher. He finger walked (held the fingers of his church teacher and walked). He pulls up all over the place. I think he is figuring out that there are some pretty cool things on counters.

We have not pursued further testing to find out what is going on with Luke. We don't really have the time or the money. Also, having a name for his disability does not change anything. I feel that worrying about the future is a waste of time. We will take each day as they come.

Luke is happy. He only gets grouchy when I won't allow him access to my bedroom and bathroom. We live a busy lifestyle and he just goes along with whatever we are doing. I guess that is why the focus is kind of removed from him. Sydney takes Ballet I on Mondays and Jazz I on Thursdays. Logan has RA's on Wednesday nights. Gracie has gymnastics on Thursdays. Luke and I have our time for 20 minutes each night after Marty leaves for his second job. I am trying to give each of the kids some undivided attention. We have never been a family that revolves around Luke's disability. Of course, Luke's disability is not life-threatening and we all have come to a point of acceptance.

Sydney has turned out to be a girl after my own heart. She has a love for children with autism. She helps Luke and protects him. She also helps boys in her grade. She sits next to them during lunch and guides them. Gracie and Logan love Luke, but Sydney is different. I am so thankful that she has a sweet heart.

Our family is just so precious. We have our weaknesses, but all together, we are awesome.

My Lovebug

Is this not a beautiful picture of my little Luke?! He is such a beautiful angel. I find myself worrying less about what is not right about him. Look at all that is right with him! He is beautiful, sweet, strong, loving, funny, silly, and a wonderful human being. His laugh is contagious.

My nickname for Luke is "Mommy's Lovebug". It just fits. I certainly love my son so much. I am thankful that God chose me to be his mommy :)

My Happy Boy

This is my son. He has a great personality. He is this amazingly strong individual. Most people look at him and make judgments based on his disability. Yes, he has a physical disability. Yes, he has a huge communication delay. Yes, he has pretty major global delays. I can admit these things, but I refuse to put limits on him.

At school, he is grouped with peers that have "profound" disabilities. I honestly do not think that he is appropriately grouped. His physical disability and global delays cause him to be grouped with this population of students. There is something more to him, though. I know I am his mother and I am automatically biased, but there is more going on inside his little head than any of us really know. You can see it in his eyes. I truly believe that he is a boy who is trapped inside his body.

It takes time to look past what is on the outside.

The Story of Luke's New Stroller

Several weeks back I posted that I would be selling some things on Facebook in order to save money to buy a stroller for Luke that would be able to meet Luke's needs. This is the stroller I felt best met Luke's needs at this time-

This is an EIO Special Tomato push chair. The back is higher and it has a wonderful foot rest. It has big wheels and all kinds of nice features that will allow Luke to be comfortable without having to get a wheelchair. I knew it would take some time, but I wanted Luke to have the best.

I set it in my mind that I would start selling things (of mine and the three kids) in order to save money to make this $500 purchase. I updated my status on Facebook asking my FB friends if they were interested in buying some specific items. From that status update, I began receiving feedback from a couple of people wanting to help. This truly blew me away. I did not expect people to want to give us anything.

Honestly, I had been going through a funky phase of truly questioning my faith. I was going through some sort of emotional and spiritual fight in myself. I never realized that people, outside of my family, really cared anything about what we were going through. So, a few people came out and stated that they wanted to help financially. A gift certificate was purchased and a couple checks were sent. Then, my Mother called and said that we had a package at their house. It was the stroller. The exact stroller I wanted for Luke had been paid for and shipped to my parents' house. The person wished to stay anonymous, so my mother gave no opinion as to who it could have been from.

There were just no words at that moment. God really did care! He was taking care of Luke and taking care of us. I did not deserve this, but God chose to bless our family anyway. Wow.

Safe Place

My safe place does not have walls. It is not a physical place that can be felt or seen. This place is somewhere deep inside- somewhere inside me. I go to this place quite often. It is a comfortable place. I have read somewhere that mothers of children with disabilities can have something called "Mask Syndrome". Honestly, I think anyone can have this syndrome. We all put on a mask that we sometimes hide behind. To others around us, we are happy and we are strong. Our lives are just fine. There is nothing wrong. On the outside, all is ok, but inside we are in so much pain.

I can tend to wear that mask. In some ways, wearing a mask is ok. There are not many people who can handle all of the trouble that you are dealing with inside. I don't really want to admit that I am dealing with pain. I just stay away from thinking about the pain I deal with. I am more comfortable writing through it.

I deeply love all of my children. Each one of them present challenges that are unique to them. Luke's challenges can, sometimes, overwhelm every other challenge in my life. I try to not let it overwhelm me, but there are times in which it cannot be helped.

I took Luke to the chiropractor today. Luke was in a good mood, but he was pretty stimmy and was quite loud. I actually began to feel embarrassed. The chiropractor enjoyed Luke and Luke thought his little back popper tool was awesome, yet I felt stressed. I know my affect reflected what I was feeling. Knowing that the doctor could see this made me feel even more embarrassed.

Why is it that I cannot get over my emotions? It's like my feelings cycle. Sometimes I am ok with everything. I go for weeks without feeling stressed about Luke. Then, it changes. I get so mentally exhausted. It is only when mental exhaustion sets in that I begin to feel like I cannot go through this stuff with Luke alone, yet I am alone. I go to every appointment. I have been to every IEP meeting. I read the notes from school and then respond. I need to have some fun. I need to enjoy my life. Everyday, I focus on God. Anytime I am tempted to let myself sink into a funk, I think of all God has done for me. I am continuing to focus on God today, but I felt that I must get all of this out. It is impossible to continue forward movement when pain is holding you back.

Pushing Past My Pain By Serving Others

Honestly, I am so thankful that God gave me the ability to use my pain to help others. Over the past 4 years of Luke's life I have been down many roads, and now I believe I am on the right one. I can acknowledge the fact that my heart hurts for Luke. I see him regressing in some ways and it just tears at my heart. I constantly wonder if it is my fault that he is not progressing more. Would he be further along if I were able to stay at home with him?  What can I do to help him? Which behaviors are just bad behaviors and which behaviors are a result of him not being able to use words to communicate? Is he happy? Is he anxious? Does he get scared? Is he hurting? All of these questions and very few answers!!!

So, instead of concentrating on these unending, open-ended questions, I choose to focus on my teaching of kids with autism and moving forward to serve others going through what I am going through. God has given me great ideas. Chasing Away, my FB group of mothers of children with various disabilities, is one outlet for my pain. I find support with these ladies and I am also able to give support.

My second, God given, idea is my "Care. Don't Stare!" campaign which I have not yet started. My brother-in-law did the artwork on my logo...

The basic principal behind this campaign is the following;

I would like to educate the general public on how to respond to a person with disabilities and their family when out in a public place. There is so much information out there about what not to do. Many people think that just ignoring the family and the individual is the best plan, when that is actually offensive to most families. I would like to put a list of "Caring Actions" the public could choose instead of just ignoring the individual and their family. (I am planning to use the input of others to create this list) 

© J.Daniel 2012 

I am still developing the whole idea, but I think this is a campaign that is needed. 

I will continue to use the Word of God, my relationship with God, my faith, and my service to others to fight pain. This is a battle easily won with Jesus Christ on my side :) 

My Inspiration...

My Family- My Inspiration

 The Daniels missing Logan

 My Lukie- Major Inspiration

 Sydney is Luke's loyal caregiver

Lukie Daniel: Mommy's inspiration. You give me a reason to push forward.

God gave Luke to me for a specific purpose. Luke was born to bring glory to God.