My world

William's speech therapy session actually ended on time today because he fell into a deep peaceful sleep. It may have been his way of saying, " all done everyone can leave now." It was that time of day that I feel sluggish so I made myself a cup of coffee and settled down with my computer. Imagine that! My twins were actually napping at the same time and the house was wonderfully quiet. Ahhhh, perfect....but what did I proceed to do with such cherished time? Research normal and abnormal brain development, look at CT and MRI images, and charts of brain anatomy.   Followed by all of William's neurology reports which I have read at least a half dozen times already. One line from his report reads like this,  " his (William's) MRI is impressive in lack of brain matter. He does however have a strip of cerebral cortex."  Well yippity skippity, a strip of cerebral cortex!! I hate the use of the word impressive here. I made a mental note to once again have the Neurologist explain in further detail " impressive lack of brain tissue." Also to ask how much of the occipital lobe is smooth which probably is resulting in his cortical vision impairment. So painful to read!!

Reading these reports and viewing such brain images I feel that I am in a different world being a mother to a child with a severe neurological condition.  A world that I did not choose to be in. I chose to be a mother which I love. I love William a tremendous amount.  So much that I notice every new freckle on his smooth face. So much that I can feel my chest constrict with fear of loss; that I am crumbling while trying to gain control.  Perhaps that is my motivation to re-read awful reports and research brain anatomy......to feel in control. Knowledge is power, right? Why then do I feel so afraid for his future that I can not yet know. 

Tomorrow if I am lucky enough to have another quiet sacred and few hours I think I will settle down with my mystery novel and escape.......

Adirondack pictures

Grandma chats with William in the first picture. In the second my sister Ame and I are getting ready to take Ella for a swim. She is not sure because she would rather swim with Daddy!! In the third picture my husband, wayne, and Ella check out Matt's guitar. In the fourth I am looking out over a beautiful view after a short hike and finally a picture of Ella swimming with Daddy. 

more Adirondack pictures

Pictures from our family vacation and my 30th birthday celebration. 

Family Vacation

Here we are again for our yearly vacation to the Adirondack park in upstate New York.  My parents have made a tradition of renting a different cabin each year for family fun. This was our second year of the tradition. My parents, three sisters, their boyfriends, Wayne and I and twins all came this year!  The "cabin" was ten times nicer than my own house with a beautiful view over a little man made lake and endless pine forests in the Southern region of the park. Last year we rented a climbing lodge called Rock and River located in the high peaks region.  That was my parents first choice as they were and still are avid rock climbers. Although Wayne and I love the high peaks region it was nice to be by water this year. Ella loves to swim and William is even growing to like the water when warm enough. 

So sounds wonderful, right? All was well in the Adirondack paradise? Wrong! Although it was wonderful and relaxing for a few days my family soon learned that we can't spend an entire week in one cabin together. As you can imagine four sisters can be caddy and for their significant others to get along is nothing short of a miracle. But perhaps this is just my twist on the event and I may be jaded.  My emotional state has been stressed this summer and I have been more depressed than usual. I have been feeling apprehensive about leaving the twins and refused to leave them with Grandma for a few nights when Wayne wanted to go off hiking. I love being in nature and hiking just as much as my husband does so he could not understand my hesitation. Anyway, our marriage is now doing worse than ever and we ended up leaving the Adirondacks three days early.

Despite the tension I truly did have a nice time and the twins loved being with my family. Here are some pictures!!

More Garden pictures

William in his swing!

This Summer we were given a hand -me-down swing set which Wayne stained and repaired. The twins love it!! I am able to get more work done in the garden while they swing or play in the sandbox. William is also able to sit in the little tykes toddler swing some some adaptions. The swinging motion is great for his under-developed vestibular system. 

Growing a Garden

This summer my family began several gardens. Some flowers gardens and a vegetable garden. Keeping the rabbits out has been a challenge and conditioning the soil took several weekends. Overall though it has been well worth the effort. The snapdragons are beautiful this year and I love to watch Ella exploring all the growing plants. She loves to imitate me when I am pulling weeds and gingerly touching the new veggie growth.  Today we tasted the bean and peppers although I think they need more time. Soon we should be eating a huge variety of vegetables and have enough to share with friends.