Wednesday, July 29, 2009
Sunday, July 26, 2009
Posted by Alicia at 9:32:00 AM
Thursday, July 23, 2009
Posted by Alicia at 6:24:00 AM
Tuesday, July 21, 2009
Thanks Elizabeth, Charles and Ashleigh! The dresses are so cute on her!
This next series of pics demonstrates what I have to do to take non-blurry photos of Marissa now. I hate to use the flash (I just think it makes everyone look fake and washed out). So I took her outside so I could take pictures of her while she was moving and they would not be blurry. She thought it was a fun game to watch me run to the other end of the patio and then chase after me. :)
Posted by Alicia at 1:22:00 PM
Sunday, July 19, 2009
Thursday, July 16, 2009
Posted by Alicia at 5:55:00 AM
Wednesday, July 15, 2009
Monday, July 13, 2009
A little backstory:
Posted by Alicia at 2:55:00 PM
Friday, July 10, 2009
Just thought I would go over a few random things that are on my brain for the end of the week.
Posted by Alicia at 1:57:00 PM
Wednesday, July 8, 2009
One of my favorite parts is the line in the song that goes "you're low-fat, well I'm working on that" and Marissa sings "fat fat fat". :)
I have been trying for a while to get this on video and I still wish I had a better example of how Marissa sings with her music. Just last night we were singing, err, I mean she and that crazy, no-talent, bad singing weird lady were singing, and Jeremy was upstairs working on something. Of course I didn't have the camera on and she was singing her heart out to this same song. I would hear a little chuckle from Jeremy every now and then. She just clams up and gets really distracted when the camera comes out.
In fact, here is the video I shot before that first one and you can see what I am talking about. I know this is not a unique problem but I just wish I could catch it on video better.
Posted by Alicia at 6:08:00 AM
Sunday, July 5, 2009
Just look at that guilty face (and the trach sans cap!!)
Chatting it up with Ben and Brandi's son Tommy. Cute little guy! Unfortunately, I did not get any pictures of their daughter Grace, who is not only beautiful, but such a sweet little girl.
Posted by Alicia at 9:52:00 AM
Thursday, July 2, 2009
I came across this on another blog and thought it was not only beautifully written but it so perfectly describes how I feel being Marissa's mom.
A Bill of Rights For Parents of Kids With Special Needs
We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
For a printable copy, e-mail LoveThatMax@gmail.com.
Written by Ellen @ To The Max whose son has Cerebral Palsy.
Posted by Alicia at 9:02:00 AM
Wednesday, July 1, 2009
Please pray that Jeremy passes a very important test today. This particular test is a requirement of his job. He does have several times to take the test but his employer will only reimburse for one time and the cost is $260. Jeremy is super intelligent and he knows his job like the back of his hand, he is just not so good at taking tests.
Please pray that I am able to get Marissa out of this new trend of not taking naps. She gets really crabby in the late afternoon and evening if she does not take her nap. It is bad for her, bad for me, bad for us.
Please pray for Marissa's Ear Nose and Throat doctor (Dr. P). She is pregnant with twins and has already been on bedrest. She came back to work for a couple of months but is back on bedrest for the remainder of her pregnancy. She is due around the end of August, so for her to be out for good this early is scary. While it is very rare for any pregnancy involving multiples to go to full term, I am worried about her and the babies.
Related to the last request, please pray that Marissa's medical care will not suffer while her doctor is out for the next few months. Basically, the timing couldn't be worse. Even though we may have hit some hurdles in regards to Marissa's airway, we are still really trying to work toward getting Marissa's trach out by the beginning of fall. We haven't been told "no" yet, so we are trying to stay positive. We were scheduled to go see Dr. P on July 7 and she was going to scope Marissa to get a better picture of what is going on with her airway. Now, Marissa's chart has been given to a doctor who has never seen her and does not know her. Normally, with most patients, this would not be a problem. But Marissa's case is quite complex and she is best served by seeing someone who is familiar with her and her history. I had asked Dr. P if we could have Marissa's case transferred to a particular doctor (Dr. E) during her maternity leave and she said she thought that was best. This did not happen for some reason. Dr. E is the one who actually did her tracheotomy and who cared for her until we transferred her care to Dr. P in Nov '07. He knows Marissa and what she was like from the day she was born. Please pray that when I get ahold of her doctor's office that we can have her chart transferred to Dr. E with no problem and that he can help Marissa on her path to getting the trach out until Dr. P returns.
Thank you friends. God hears our prayers!
Posted by Alicia at 6:04:00 AM