Isabella is 1 year old!

Bella a couple of days old.

Bella and Grace (March 24, 2011)

March 24, 2011

Happy birthday Baby!

I can't believe that it has been a year since Bella was born. I can remember talking with my mom on the phone right before I had the c-section that I knew the next year would go fast, but I had no idea how fast it would really go by. Isabella went from a 6 pound newborn to a 23 pound baby in one year. She is funny, smart and sassy. Here are some fun facts about Bella at 1 year old....

Favorite song: Gilmore Girls (theme song)

Favorite TV show: Mickey Mouse Clubhouse

Favorite Toy: Baby gum ball machine

Favorite Food: ANYTHING!!!!

Words she says: Da-da, Ba-ba, Uh-oh, Ma-ma, she will sign "water" and "more".

She loves to be outside or be carried by Mark or I. She enjoys playing with the kids and throwing her food on the floor when she is all done. Bella has brought tremendous joy to our family and is one loved little miracle. Happy Birthday Baby!!

Luke is 8!!!!!!

My baby is 8 years old!!!! I can hardly believe it. I still remember the cute baby that came to visit around 8 months old. And now he is 8! Time really flies by. Luke continues to be such a joy to me and I treasure his conversations with me and the purity of his heart. Here are a few 8 year old facts about Luke....

Favorite color: Black

Favorite animal: Dog (he wishes we could have a real one).

Favorite TV show: Top Shot! or Mythbusters (Thanks Dad)

Favorite Food: Ice cream!

Favorite Movie: Karate Kid (the original)

Favorite Place to Visit: Maui, Hawaii (he seriously wants to move there and play in the ocean).

Favorite Movie Series: STAR WARS (all but the Revenge of the Sith, which I won't let him watch yet because it is rated PG-13).

Loves to ride his bike, play nerf guns and is very into art and art projects. He is my little note writer. He is always leaving notes and writing for us to find. I LOVE that he does that. He is also a great reader. He is trying so hard to read chapter books because he wants to say that "I can read chapter books." He loves Isabella and they have a special connections. He loves Grace too, but they get on each other nerves, yet always have to know where the other is at. Too cute. I love you little man. You are amazing and I am so proud of you and to be your mommy.

Luke at 13 months old

Luke 2 years old

3 years

4 years

5 years old

6 years

7 years old

My new 8 year old!!!

What the World Needs.....

LESS worry about the food pyramid, and MORE babies helping themselves to their preferred snack choice.

Evaluations

Evaluations....what are they really? A snapshot...an opinion...a thought...or are they an assessment given to summarize where a child is at, at a given moment? I am in the stage of waiting for all of these evaluations to come back on Luke. April 12th will be our day... mental note...need babysitter...mental note...need to take the day off work....the day we find out about Luke's evaluations. Over these last 35 days, Luke has been given all different types of evaluations. Some of them I am familiar with...some I am not. These data devices help us to plot out where Luke is on the Bell curve. We are looking to see how many standard deviations Luke falls from the norm. Anything over -1.5 standard deviations from the norm is a cause for a delay and needs to be addressed. They will have looked at and evaluated Luke's social/emotional/behavioral skills, cognitive skills, fine motor skills, academics, occupational therapy, sensory, speech and language, and medical history. I located, picked up and delivered all of Luke's medical records as requested. Glad I can check that off my list. I just keep praying and believing that all my hard work and effort will make a difference on his IEP (Individualized Education Program).

In other NEWS....I did 12 loads of laundry today. 7 loads I did at once at a laundromat. I have found myself so far behind that I just wanted it all finished. So I loaded up, and went washing. It was kind of fun.

Grace is getting an award in school. Bella will turn 1 next week and Luke will "officially" turn 8 next week. I am looking forward to Spring Break and planning to take the kids to some type of kid museum somewhere.

Fighting the Fight

"I have fought the good fight, I have finished the race, I have kept the faith." 2 Timothy 4:7

...."Luke has childhood onset glaucoma, " Dr. Edmunds said. Even though I knew those words to be true, they stung in my ears. Why? is the question that keeps going through my mind. Why Luke? He has been through so much. Let him be.

Today has been a horrible day. Just personal reasons that I am not sharing at this time. Perhaps later.

I am in the middle of a fight. A LONG fight. A fight for justice, a fight of fairness, a fight for Luke. He deserves so much, but all I am fighting for is what should be his anyway. I am fighting agencies, I am fighting government, I am fighting schools, I am fighting with doctor's records departments. I am even fighting the people that speak acceptance of blessings like Luke. I am fighting for him to get a good education, fighting for his health and wholeness, and fighting for funding to cover everything I can't. I am fighting for a job to provide the things that I fight for him. It is never ending. And I am fighting tiredness, discouragement and loneliness. I will give you one guess on how many friends I have with children who have any two of Luke's many syndromes. I am fighting scary thoughts I have when the house is quiet and I am alone. I am fighting against wondering what life would be like if Luke was blind. It brings me to tears even now. He got a a little be be gun for his birthday. Both grandmas were not happy about this in the least. It was funny...or ironic...or sad...I wasn't worried about the safety aspect. I was glad he was having the opportunity because it is something he wouldn't be able to do if he was blind.

I try not to think too much about those thoughts, but they are there. Swirling around in the back of my head waiting for quiet moments to flood my mind. So today the fight is done. I will of course pick up fighting for him tomorrow.

Grace is 6!!!!

(Grace in Hawaii; almost 6 years old)

(Grace 5 years old)

(Grace 4 years old)

(Grace on her 3rd birthday)

(Grace 2 years old on Easter)

(When Grace came home: 1 year old)

Happy birthday to my princess who is now 6 years old!!!!! She is the first of my March birthday madness. I can hardly believe that she is 6 years old. We baked cupcakes and took them to her kindergarten on Friday so she could celebrate with her classmates (complete with princess napkins). We are having her birthday party (and Luke's and Bella's) Saturday the 12th. It is a "Mad Hatter" Birthday party complete with an Alice "doll" cake that I will baking. It should be fun, and a lot of work...but they are WORTH all the hard work in the world. I just want them to look back on birthdays and traditions and KNOW that they are SPECIAL.

So here are a few facts about Grace at 6 years old....

Her favorite color is: PINK (there's a shocker for you:)

Her favorite animal is : A HORSE

She LOVES to sing any songs and even made up ones. She is the one that ALWAYS asks me to turn up the music in the car.

Her favorite DISNEY Princess is: CINDERELLA (today anyway)

She wants to be a BAKER and COOKER when she grows up but NOT A CAR WASHER.

I love that she still has phrases that I haven't corrected because they are too cute such as : "glassable" and "Kitty Hello".

I love that she is a girly, girl and LOVES clothes, having her nails painted, make-up, fun shoes and shopping. She will really be a lot of fun when she is older.

Happy Birthday to my FAVORITE 6 year old! Mommy loves you so much!

Luke's Bad Day

(Luke @ 3 years old)

I feel as though I am constantly fighting. Fighting for Luke, fighting doctor's office for reports, fighting government agencies, fighting with him to take his meds, fighting the school for them to do their part....I'm tired, so tired....and yet the fight continues. It has to continue. It doesn't stop.

Luke had a bad day yesterday. So, now I am fighting with teachers. I thought sending Luke to public school would get him the services he so desperately needed. Boy..was I wrong. I spent hours talking with school officials about my concerns. About how Luke was different, about how I was worried about him being bullied and having no friends, about his tendency to be bossy and argue. They "assured" me that they had strategies in place to help him deal with these things while they re-evaluated him. Yesterday, Luke was embarressed by his teacher in front of the whole classroom because of social skills that Luke doesn't yet have. He essentially got "in trouble" for having a giving heart. The teacher called me to tell me this and when she did I just laughed because I didn't see how it was big deal. She told me that she instructed class not to "accept" things from Luke anymore. Apparently, Luke gave away all the mechanical pencils I bought for him at Target. Big deal. When I talked to Luke about this, he told me "Mom I was so embarrassed that I couldn't even talk or look at anybody. I wanted to run away." My baby!!! I am the horrible mother that put him in this situation. Can you believe it? Because somehow I thought this was the magic class, the magic pill the magic whatever that would help him and solve all my problems. What a naive attitude right? Let's just face it...I was delusional :)

Now I have a little boy who HATES school. He cries, refuses to go out to the bus stop and even runs and hides. He cries to me "mom I have NO friends. Nobody likes me. I hate school." What is a mama to do? Here he has adhd, microcephaly, tourettes, glaucoma, sensory processing disorder, etc. and I fed him to the wolves. Mark and I have been round and round and discussing everything. What am I to do? How do I find something, some program that is a good fit for LUKE. My heart is breaking. I should be able to figure this out, but I am stumped. There is just one thing I know for sure. This can't keep going on. Something has to change, or my sweet spirited, loving little boy is going to be crushed. Help.