Jumping back in

There are so many things that I could write about. So many things that I am grateful for. But today, in my silent house, all I can seem to think about is my Son. Lukie. Lukapotamus. L. Luke-a. Bud. Sometimes Prince Charming. 

I was looking through my side table drawer last night and I came across a journal I use to keep. Much like this blog it is something once frequently visited. Life got busy, other things became the priority until, eventually the journal had been closed for good.. It just so happened that these pages were filled at a time of great struggles for me. It started about the time that Luke was diagnosed with AS, a very emotional one for our Family. Not because of the official pages hand-written by a Pediatric Neurologist stating the words. And not because those words have changed our lives. The reason that was such a trying time for me was because I was feeling as though I was a failure. I could not get through to my Son. He was often angry and upset. There were days that I would pray he would sleep a little longer, only because I did not know what to do with him many of his waking hours. Not proud thoughts for a Mother.

I was going through entry after entry. Remembering my struggles with this boy. Recalling all of the times I would just have to put him in his room to scream because there was nothing else to be done. I avoided going out in public with him. I had constant red scabs from angry encounters with his fingernails. He would pull my hair sometimes in fits of rage. Yes, it was a very trying time. I wondered what Heavenly Father was thinking sending me this boy. I could clearly do nothing right. I was obviously loosing. Failing and feeling pretty low. Embarrassingly, my greatest desire back thenwas for him to be "normal".. whatever that was. I constantly compared him to other boys his age and couldn't help but to feel sorrow. I envied the ease I saw in their days. And wondered what life would be like if Luke could understand the way I saw his friends grasping.

At that time most people never knew how bad things would get. How dark many of my days were. Nobody wants people to know that they have a child who is out of control. No one wants others to pity them because of their Son's short-comings.. I only wanted people to see the best parts of Luke. To know of his love, his honesty and sensitivity. How incredibly smart he was and how infectious his laugh was. There were good days. Back then they much less frequently but, when they came, they were magical. On those days I would lay in my bed at night wondering what I did differently. What I did that was right that day. What food's did he eat? I spent so much time waiting for things to turn or planning my day to avoid potential hazards that I could almost never fully enjoy them though. It was a wonder to me that, for many, those were constant, normal days. I couldn't imagine.

Our days were spent preparing ourselves for the next melt-down. I would avoid certain isles in the Grocery Store. I would be home at certain times, with no variables, for naps and bed times. My life was spent looking around the next corner. And it was physically and emotionally exhausting!!!

The reason why I bring these things out is not to feel sorry for myself. Or for Luke. Its to rejoice. The path that we took was one of hard work, consistencies and hope. I knew that I would do anything for Luke that I could do in order to help him come out. The real him. Behind those often glazed over eyes was my boy. The one who I have the privilege of being with everyday. He is an absolute joy. Watching him work so hard over the last couple of years has been so humbling. He amazes everyone with whom he's ever worked with. 

In his last IEP, as he now no longer even qualifies for services, the head of the department spoke of Luke. She said that in her 20 years of working with children of various levels in the Special Education Department she had never seen anything like it. She stated that she had never witnessed so much change in one person before. That most people would probably never believe that his first IEP was even the same boy. I cried.

So now as I type this I cry again. I am so proud of this special little boy of ours. I am so grateful that Heavenly Father chose me to be his Mother. I cry because I get to see this tremendous spirit of his battle out the ghosts in his head, and to defeat them. He is strong, he is valiant. He is a fighter and he is wise. I can not tell you how much Luke has changed me. I value and embrace every good day, every smile and conversation. He has gone from being one of my greatest trials to my greatest joys. I have loved serving him and helping him through this part of his journey. He is a miracle that I have been blessed to watch unfold. I see now how lucky I really am. And I wouldn't change the past for anything. It has gotten us to where and who we are today.

Alone

Last night at about 5 pm I decided to go out and run an errand. You can all appreciate that I went out to get Ella's red shoes that I had put on hold. A nearby Target finally got a few more in and I bolted. So I went out all alone. It was so nice. I rarely do things by myself. I am a pretty social person and usually if I cant do something with someone else I tend to just not do it at all. Well last night I was having a little bit of a grumpy hour and needed to just get out, so I did.

I went to Target, out to dinner by myself ( which was amazing) and shopping at TJ Max. I got to take my time, go slow and be alone with my thoughts. It was wonderful.

While out, being grumpy and feeling bad for myself, I called up one of my closest friends Jenn. At the end of the conversation she told me the following story. It haunted me all night and made me feel ridiculous... being grumpy for such silly reasons. 

" My Sister-in-law went in on Monday to have her labor induced. She had an appointment with her OBGYN the previous week and all was well, as it had been the entire pregnancy. Family was in town, showers had been had, the clothes were washed and they were ready. She excitedly went to the hospital to have her long-awaited( it took them years to get pregnant) little girl. As they were hooking her up to the monitors they heard a problem... nothing. There was only one heartbeat registering on the monitor, her own. Her baby had died. She still had to go through labor and delivery of her still-born daughter. The autopsy showed that she had been strangled by her umbilical cord... maybe the day before. They got to sit alone with their beautiful, full-term baby for a couple of hours before they took her away. The Family will be flying out to Utah this weekend to bury the daughter they never got to meet but love more than anything."

I just want to cry everytime I think of this. And I cant stop thinking about this. It really puts things into perspective and makes me feel grateful and so fortunate. So my thoughts are with this amazing couple and I pray that they can get through it, I know they will. But I also know they can use as many prayers as they can get.

Who is this girl?

Ella is driving me bonkers recently. I am hoping that this is temporary. Blaming it on her perpetual Winter cold or that fact that she may be working on her 2 year molars. But I think its less those things then I'd like to admit. This girl has been downright sassy, grumpy and naughty. Not to mention the fact that she's basically stopped eating.

Yesterday I was awoken from a nap, I love my life, to Dave screaming Ella's name like I had never heard him do before. I sprinted downstairs and saw it. Black Sharpie all over GG's things and all over Ella and her clothes. She had found this marker and went to town on GG's chair, pillow, books, dresser and mirror. I wanted to kill her. These are the few things that GG actually uses consistently. And among the very few things she has brought here from her old home... and my kid has gone and turned them into an art project! I was horrified and embarrassed. We got it off of the furniture but that was the best we could do. Of coarse GG was a star about the whole thing. "Those things are bound to happen." and " I can just flip this pillow upside-down and you wont even see any of it" Were among the words out of her mouth... I love this Woman. I think she was the one who felt bad that Ella had been yelled at and put in her room for so long. 

So, here is my new, naughty Ella. Any suggestions? Besides to keep the markers out of the house.

shoes and shots.

I guess everyone buys red shoes for their girls at Christmas time. Its ridiculous. I have been looking for red mary jane's in a size 7 for Ella and have looked everywhere. I should have bought the cute one's I saw at Target last month but I thought I had plenty of time to do it. I have looked at every shoe store they have at both 5 points and the mall. I have looked online. I even borrowed some cute one's from a friend that would have worked perfectly, only they are a little too small. There are a pair that I can get that are great but they're a little more than I want to pay for something she wont wear very often. Dave is getting fed up with my looking though and just wants me to buy them already. I am usually the one what can find anything. Where are all the red shoes in a size 7? If any one of you see's them out there put them on hold for me.
And when are we going to get our Christmas pictures taken? The kids have been sick, its been cold and rainy. I wanted to just take them to Mile Square and let them run around but things have not quite been conducive to picture taking recently. And I have come to the conclusion that this year we will be lucky to get a picture of the 2 kids... let alone the entire family. We will be sending a picture out. What that will be or when remains to be seen... or known.

Luke's allergies

Just a cute thing that Luke said today that made us laugh so hard.
Ella had a slice of cheese that she was walking around eating. Now Luke is allergic to dairy product's and he's getting pretty good at recognizing the things he can and can't have. He knows cheese is on the "no" list.
Ella walked over to Luke and sat down right next to him. He said that he wanted her to move and that she was in his way.
I told Luke" She can sit by you, it's not a big deal".
I think he saw that the conversation was not going in the direction he had wanted it to go. He finally said,
"Sorry Ella. You have to move away from me. Im allergic to cheese.... sorry""
I love that he now try's to use his allergies to his benefit.

My personality type

WARNING

This is really long and may bore the reader. This is something I saw on a friends page and thought it would be fun to do.

As an ESFP, your primary mode of living is focused externally, where you take things in via your five senses in a literal, concrete fashion. Your secondary mode is internal, where you deal with things according to how you feel about them, or how they fit with your personal value system.

ESFPs live in the world of people possibilties. They love people and new experiences. They are lively and fun, and enjoy being the center of attention. They live in the here-and-now, and relish excitement and drama in their lives.

ESFPs have very strong inter-personal skills, and may find themselves in the role of the peacemaker frequently. Since they make decisions by using their personal values, they are usually very sympathetic and concerned for other people's well-being. They're usually quite generous and warm. They are very observant about other people, and seem to sense what is wrong with someone before others might, responding warmly with a solution to a practical need. They might not be the best advice-givers in the world, because they dislike theory and future-planning, but they are great for giving practical care.

ESFP is definitely a spontaneous, optimistic individual. They love to have fun. If the ESFP has not developed their Thinking side by giving consideration to rational thought processing, they tend to become over-indulgent, and place more importance on immediate sensation and gratification than on their duties and obligations. They may also avoid looking at long-term consequences of their actions.

For the ESFP, the entire world is a stage. They love to be the center of attention and perform for people. They're constantly putting on a show for others to entertain them and make them happy. They enjoy stimulating other people's senses, and are extremely good at it. They would love nothing more than for life to be a continual party, in which they play the role of the fun-loving host.

ESFPs love people, and everybody loves an ESFP. One of their greatest gifts is their general acceptance of everyone. They are upbeat and enthusiastic, and genuinely like almost everybody. An ESFP is unfailingly warm and generous with their friends, and they generally treat everyone as a friend. However, once crosesed, an ESFP is likely to make a very strong and stubborn judgment against the person who crossed them. They are capable of deep dislike in such a situation.

The ESFP under a great deal of stress gets overwhelmed with negatives thoughts and possibilities. As an optimistic individual who lives in the world of possibilities, negative possibilities do not sit well with them. In an effort to combat these thoughts, they're likely to come up with simple, global statements to explain away the problem. These simplistic explanations may or may not truly get to the nature of the issue, but they serve the ESFP well by allowing them to get over it.

ESFPs are likely to be very practical, although they hate structure and routine. They like to "go with the flow", trusting in their ability to improvise in any situation presented to them. They learn best with "hands-on" experience, rather than by studying a book. They're uncomfortable with theory. If an ESFP hasn't developed their intuitive side, they may tend to avoid situations which involve a lot of theoretical thinking, or which are complex and ambiguous. For this reason, an ESFP may have difficulty in school. On the other hand, the ESFP does extremely well in situations where they're allowed to learn by interacting with others, or in which they "learn by doing".

ESFPs have a very well-developed appreciation for aesthetic beauty, and an excellent sense of space and function. If they have the means, they're likely to have to have many beautiful possessions, and an artfully furnished home. In general, they take great pleasure in objects of aesthetic beauty. They're likely to have a strong appreciation for the finer things in life, such as good food and good wine.

The ESFP is a great team player. He or she is not likely to create any problems or fuss, and is likely to create the most fun environment possible for getting the task done. ESFPs will do best in careers in which they are able to use their excellent people skills, along with their abilities to meld ideas into structured formats. Since they are fast-paced individuals who like new experiences, they should choose careers which offer or require a lot of diversity, as well as people skills.

ESFPs usually like to feel strongly bonded with other people, and have a connection with animals and small children that is not found in most other types. They're likely to have a strong appreciation for the beauties of nature as well.

The ESFP has a tremendous love for life, and knows how to have fun. They like to bring others along on their fun-rides, and are typically a lot of fun to be with. They're flexible, adaptable, genuinely interested in people, and usually kind-hearted. They have a special ability to get a lot of fun out of life, but they need to watch out for the pitfalls associated with living entirely in the moment.

I love this Weather

Mom and Luke. December 2005 in Naperville, Illinois

Luke and Dad. or cold and colder

I have been so happy these last 2 days. Yesterday was cold and rainy. Today... cold and windy. It just makes me so happy and upbeat. I know it sounds weird but I just come alive in the cold. I get in the mood to clean and organize. I want to go out and be enjoying the opportunity to wear sweaters and coats. I love the way my cheeks feel, un-protected from the air and frigid. Red and rosy. 

So I am hoping to have another "cold" day tomorrow. I must admit today was  about 58 degrees but there is something about that wet, moist breeze that can cut right through you. I really do love it though.

I was remembering, as we went out to get our tree today, 2 years ago in Chicago. We went out to get our Christmas Tree, I was 9 months pregnant and it was maybe 17 degree's outside. After about 10 minutes we had to go home because Dave's hands were bright red. We forgot gloves and it was pain to keep taking his hands out of his jacket pockets to lift up trees as we inspected them. He took us home, Luke was a freezing mess, and went back to get the tree on his own... gloves in hand this time. Now that was cold. I still sort of enjoyed even that though and I miss, crazy as that may sound.