Thankful Thursday

Is it Thursday already? What a hectic week - two IEP meetings, one good and one not so good, doctor appointments, an 80 hour work week in just 4 days...Let's see if I can come up with 10 things for which I am thankful.

Today, I am thankful...

• That Ashley is feeling good, and has had a great week at school


• That her IEP meeting went well yesterday. I've said it before, but I feel the need to say it again, her teacher this year is wonderful! She started the meeting off by having everyone list what they felt Ashley's strengths are. Quite a change from most IEP meetings where all I hear are negative things.


• That although my little buddy, Brooke, started the week off not doing well, she is now feeling better and her seizures are reduced.


• That Valentine's Day candy is already on the store shelves


• That it appears we will all be getting an economic incentive rebate from the government. This is one of those times that having lots of kids is a good thing! $600 per individual, and $300 per child = $1800!!!! Maybe I can finally get a new washer and dryer.


• For the wonderful corn/pineapple salsa recipe I tried this week. Yummm! (see below)


• For a trip to the library this weekend. I love getting new books to read.


• That this coming Monday is Ashley's appointment at the UVA Kluge Epilepsy Center. I'm so looking forward to getting a second opinion about her seizure and brain tumor issues. I'm so not looking forward to dealing with our current neurologist when he finds out we went to UVA.


• That my fat cat is so adept at catching crickets that happen to wander into our house. She is earning that expensive food the vet said she needs to eat!


• For those sticky lint roller contraptions - an absolute must if one has cats

Broiled Chicken with Corn-Pineapple Salsa

Cook Time: 10 Minutes Ready In: 20 Minutes
Yields: 6 servings

Pineapple, cilantro, bell and jalapeno peppers, and corn add unbelievable flavor to this broiled chicken.

INGREDIENTS:
6 medium skinless, boneless (marinated in Teriyaki marinade is even better)
chicken breast halves
1 (15.25 ounce) can Whole Kernel Golden Sweet Corn, drained
1 (8 ounce) can Crushed Pineapple In Its Own Juice, drained
1/2 cup green and/or red sweet pepper, chopped
1/4 cup fresh cilantro, chopped
1 jalapeno pepper, seeded and finely chopped (optional)

DIRECTIONS:
1. Rinse chicken; pat dry. Season with pepper. Place on unheated rack of broiler pan. Broil 4 inches from heat 10 to 12 minutes or until no pink remains; turn once.
2. Meanwhile, stir together corn, pineapple, sweet pepper, cilantro and jalapeno in medium bowl. Serve with chicken. Garnish with additional cilantro and jalapeno peppers, if desired.

Request Denied

Last October, I wrote about a mother who wanted to have a hysterectomy performed on her 15 year old daughter who has cerebral palsy. Katie Thorpe's mother said "She's not going to get married and she's not going to have children...Katie is not going to become a normal adult." Mrs. Thorpe also said, "All we are trying to do is keep and improve Katie's quality of life. By stopping menstruation it's allowing Katie to enjoy life to the full without the problems of menstruation...the mood swings, the tears, the stomach cramps, the pain, the discomfort, the embarrassment." Fortunately, doctors sought legal counsel before doing the surgery, and the verdict is now in - the request for surgery has been denied. Maybe that's why Katie seems so happy in the photo above.

Updates to Katie's story are reported here, here, and here.

Getting To Know Us

WE...

• Listen for the cry of the baby we just gave birth to, only to hear a small moan

• Wonder why our baby is not rolling over, lifting his head, watching us move, or many of the other developmental milestones

• Know how an NG feeding tube and a heart monitor work

• Don’t understand why our baby feels so floppy

• Just want to see one smile from our toddler, one glance into our eyes that seems meaningful

• Have nebulizers, feeding pumps, syringes, tubing and extra peg tubes in our child’s closet, the car, and at school

• Keep an envelope on the back of the front door that lists all our child’s diagnoses, all the meds, and contact information for all the specialists who follow our child. This envelope is given to the rescue squad each time they come to our house to take our child to the emergency room. Eventually, we don’t need the envelope because all the squad members know our child. They even know where our child’s bedroom is in the house because they have been there so often.

• Greet the emergency room staff by their first name

• Know which schools in our school district offer which programs, and we know which programs to avoid because we have heard from other parents.

• Know and have had conversations with the school’s director of special ed, the compliance officer, and the superintendent. The secretaries for all those people have our names and phone numbers on speed dial

• Have a list of attorney's names and phone numbers pinned to our bulletin boards at home

• Often don’t attend church because we can’t find one that welcomes our child

• Avoid taking our child on errands because we can’t take the stares and rude comments

• Say we get used to the stares and rude comments and that they don’t really bother us. We are lying.

• Know the difference between occupational therapy and physical therapy, and we know that our child can have speech therapy even if he or she doesn’t speak.

• Know where to find the toys best suited for our child’s disabilities, but usually we can’t afford them. Instead, we know how to adapt regular toys and books.

• Have car seats and helmets for our teenagers.

• Probably haven’t slept through an entire night since our child was born – even if our child is 19 years old.

• Know the best way to remove feces from walls and clothes.

• Know how to strategically dress our sons so masturbation will be more difficult to accomplish

• Never leave the house without our child’s comfort item, and at least two backups to that comfort item.

• Long for close friendships, but usually have none. If we do have a close friend, it is usually another parent with a severely disabled child.

• Have alarms on bedroom doors so we know if our child starts to roam at night.

• Lock up medicines, foods, and sometimes even sharp objects.

• Know the names of IV antibiotics and at least 7 seizure medicines

• Know all the rules of the Family Medical Leave Act

• Fear what will happen when our child can no longer see the pediatrician and we have to find another doctor

• Have a freezer full of macaroni and cheese, and a refrigerator full of chocolate pudding.

• Know which hospitals have the best food in their cafeteria

• Know the type of doctor who makes prosthetic eyes

• Are deeply in debt because of all the stuff insurance won’t pay for, like home modifications, adapted devices, special clothes, lawyer bills, and the list goes on and on

• Have nightmares about what will happen to our child should something happen to us, the parents

• Love our children more than life itself

WE...

Are the parents of a child with a significant disability, and this list is only the beginning….

Please feel free to add to it.

Still Searching

Last week I spoke to the person in charge of disability issues for my Catholic diocese. I've written before about trying to find a church that was welcoming to my family, and about my failure to find that. So, I was encouraged when my oldest daughter's behavior counselor gave me the name and phone number for the person at the diocese.

I spoke with Nita, a mother herself of an adult son with significant disabilities. I was encouraged, sure that she would understand the struggles I had been through. And while I believe she does understand to a degree, the phone call didn't leave me with a strong belief that my struggles would end.

Nita suggested two churches near me, and she was very anxious to list all the positive points about each. But when I explained Ashley's disabilities, her need for a sign language interpreter who could do tactile sign, and that I wanted Ashley to receive religious instruction, I heard the pause in her voice.

I've found that many churches believe they are accessible by the mere fact of having ramps and an interpreter at the front of the church during services. Those accomodations are indeed commendable, but they are not enough. My daughter cannot see an interpreter at the front of the church. And, I don't believe she needs to just sit in church during the service. I want her to have religious instruction. I want her to find the peace and comfort I have found in my religion. And, after attending Chancellor's funeral last week, I was even more convinced that she needs to find a faith that will sustain her during life's most difficult times. I want Ashley to understand that when I die, I will be waiting in Heaven for her. I don't want her to just think I deserted her. At this point in time, she would not understand, and that breaks my heart.

Surely a church must exist that has figured out how to instruct people with intellectual disabilities. I want to believe that there is a church that will welcome my family as well as provide religious instruction for all my children. Am I expecting too much?

Bob's House

Love.Love.Love this commercial that is scheduled to air during the Superbowl this year:

Finding Bob's House

Helping, Not Helpless

Yesterday, residents of The Virginia Home presented a check for $11,315 to the Families of the Wounded Fund.

Last December, 40 people who live at the Virginia Home swam laps to raise money for the fund that helps families of troops wounded in combat operations in Iraq and Afghanistan.

To understand what makes this event unique, read this article from the Richmond Times Dispatch newspaper:

No Limits On Generosity

And, for additional information about the Virginia Home, here is companion article to the one listed above:

More About The Virginia Home

Thankful Thursday

Today I am thankful....

• That God gives you rainbows when you need them the most


• For the chance to see two old friends this week, Sharon and Heike


• That high school mid-term exam week is over tomorrow. My sons will have an entire weekend with no homework!


• That my phone plan allows me to make unlimited long distance calls at no extra cost


• That Valentine's Day is right around the corner. Chocolate...yummmmm!


• For snow showers - beautiful but not a driving hazard


• For toothpaste that doesn't come in a tube, but rather a little bottle. That way, there are no comments made about squeezing the tube in the middle.





• For cardinals, the Virginia state bird, and a beautiful flash of red streaking through the trees on a cold winter day


• For really hot showers when I first wake up on a cold morning


• For oatmeal with fresh strawberries or fresh blueberries