Bill of Righs for Parents of Kids with Special Needs

I'm stealing this from Michelle, who stole it from Ellen.


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 butt.
* 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 children’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.

(Compiled in honor of her little boy, Max, and all of our beautiful children, on June 17, 2009.)

The past two days........

Nothing exciting happening but here's a quick update:

Miss Lila didn't sleep well on Tuesday night so you know what that meant for the rest of the house. She was up at 12 something, 1 something, 3 something, 4 something...... you get the idea. Because of this I walked around in a daze for most of the day yesterday. We ran out of Tylenol- how does that happen? We know that we can't give her Motrin right now- which we have about 3 bottles of- but apparently it didn't dawn on us as we poured the last drops out of the Tylenol bottle that we needed to get more. Perhaps because it happened in the dark of night, I'm not sure. We discovered it after lunch. My dad was already at the store so we called him. He wasn't exactly sure what to get so he asked the pharmacist. She told him Infant Tylenol. It takes a lot more Infant Tylenol than Children's Tylenol so I decide to take it back and exchange it for Children's Tylenol. I made a list of the things I needed, went to the store, returned the Infant Tylenol, got everything on the list and came home. I'm sure you might have already figured out that I never wrote Children's Tylenol on the list. I guess I figured since I was carrying the Tylenol to return it that surely I wouldn't forget to get the replacement. I did.

Fast forward to dinner, Lila was pretty much refusing to eat. She ate a few bites of bread and some rice pudding. There's some nutrition for ya. I put her to bed and she was up 2 times within 2 1/2 hours. Crying uncontrollably. Refusing to drink anything. I was sitting in the rocking chair with her and I said " I have to go potty, can I put you in your bed?" She said "No." Nick had come upstairs to check on us and left the bathroom light on. I wanted him to come back up and shut it off so I leaned toward the monitor and said, "Nick. Nick. If you can hear me will you please come upstairs and turn the bathroom light off?" Lila leans forward and says in a hushed voice, "Nick." Then a little louder. " Nick." And louder still "NICK!" Finally, as loud as she can: "NNNNNNNIIIIIIIIICCCCCCCCKKKKKK!!!!" Then she looks up at me with raised eyebrows and says "Daddy". She cracks me up.

11:30 p.m. I was checking my e-mail before I went to bed. I thought Nick was in bed when he suddenly appeared in the kitchen with a weird look on his face. "Please tell me this is not a tick in my crotch area." It was. We spent the next 30 minutes removing the tick that is now in our freezer. What a crazy day.

Today we went to Lila's school for her end of year party. For the past few days there's been about a 3 hour window in the morning when Lila is pretty happy so I decided to take her to the party. She was so funny when I brought her into the playroom to get ready. She was so excited that she got to wear a dress! So funny- I never even thought about that- we have kept her in pajamas so she'd be comfortable and I guess she was sick of it! She wanted to wear real clothes. She was kicking her feet and clapping her hands. Then I put her shoes on and she didn't take them off until I got her ready for bed tonight. She hates shoes! Every time we get in the car she takes her shoes off- no matter how long she's had them on.

Finally eating!

Hanging out in her classroom.

Lila with her teachers.

I know this post is all over the place- I'm blaming it on sleep deprivation. In other news......
We are so thankful that Lila is feeling better. We have been having such a good time with my parents here. Tiffani will be here in the morning. Life is good.

Hugs~

Linda

The pause button

It feels like somebody hit the pause button at our house. Lila's surgery was 6 days ago and, of course, there hasn't been any progress made toward walking or any of the other things I'm normally concerned about. I would imagine she's probably taken a few steps back in some areas. She's still in so much pain and now has a horrible cold on top of everything else. Poor little thing, I feel so bad for her. To think about the fact that we knowingly and willingly have put her through this is bugging me a little bit. Everyone keeps telling me that this will be worth it in the long run. I'm holding on to that, hoping and praying that everyone is right. This too shall pass.

Before Lila's surgery a friend of mine posted on Facebook about a 3 year old little girl that died during routine dental surgery. Her father is in the military and was on his way back to Afghanistan- he had been home for his mother's funeral. The little girl's mother had to go and pick her other kids up from school and tell them that their baby sister was dead. What grief. What agony. The utter helplessness she must have felt (and still feels) weighed so heavy on my heart as I read the story. My friend's husband was tasked with locating the father of the little girl and re-routing him to his home. Once again, coming home for the funeral of someone so dear to his heart. I know I've said this before but since Lila's birth I am just so raw. As I read the story of this poor little girl whose heart just gave out during a routine dental surgery I just cried and cried.

I read that story 3 days before Lila's surgery. It seems so selfish but I couldn't help thinking, "What if that happens to Lila?" The day before Lila's surgery I took her to the pediatrician for her pre-op appointment. We ended up seeing the nurse practitioner. As she took Lila's pulse and then listened to Lila's heart she got a puzzled look on her face "I hear just the slightest heart murmur. Didn't you have her PDA coiled?" I shook my head yes. Inside I'm thinking of that little girl. She listened again. This time she said it wasn't there. "Maybe I just thought I heard it. Sorry about that. I'm not hearing it now. Maybe it was just when she was taking a breath." Hmmmm.......

The day of the surgery I was a nervous wreck. It's true, I just kept thinking of that little girl. Of course I'm the one that filled out the pre-op paperwork where they list pretty much everything that could go wrong during the surgery. A person in my frame of mind might have thought to ask her husband to sign that paperwork but I guess it never occurred to me. We were both allowed to go back with Lila to change her clothes and check her vitals but only one of us was allowed to walk her back into the procedure room and stay until she was asleep. My husband asked if I'd like to go back with her and I said yes. I laid her down on the table and sang to her until she was sleeping. I kissed her goodbye and almost lost it. I walked down the hallway, fighting back tears. I was so lost in thought that I almost walked into the door. I realized that it was one of those doors that had to be activated a few feet back so I turned around to press the button and almost knocked over the nurse that was with me. Wait..... there was a nurse with me? Guess I didn't realize that. I reached out for her, she reached out for me and we both started laughing. "Sorry", I said, "I didn't know you were behind me." "I know", she said, "You were having a mommy moment." Indeed I was.

We are one of the fortunate families. Where the doctor comes out into the waiting room and says, "She did great. Everything went according to plan." Some people don't get that. Yes, the pause button has been pressed. Lila's not moving forward developmentally at this time. But she's still here. And I'm thankful. I pray every night for the family of "that little girl" because I never knew her name. Their angel is gone forever and that breaks my heart for them.

Hugs~

Linda

Playing Catch-up

A couple of weeks ago Lila and I participated in our local Relay for Life. Our team, Junior Women's Club of Loudoun, walked to honor our president, Rebecca, who is a thyroid cancer survivor. Lila and I walked to honor two of my sisters along with our friends Bruce and Mr. Pallister. We also walked to remember my Aunt Lois and our friend Dave. This was my first Relay and I was amazed at how touching it was. They opened the walk by gathering all of the survivors in front of the main stage. The national anthem was sung, the pledge of allegiance was said, and then the survivors did a lap around the track. The survivors, in a sea of purple t-shirts, carrying their carnations, made quite a sight. I felt like I was watching a private moment in a group setting as they walked victoriously around that track. Thankful to be there. Proud to be wearing the purple survivor shirts. An amazing experience that I hope to repeat every year.

Our president, Rebecca

The theme of our team:

No sock hop is complete without poodle skirts. I was attending the relay straight from a birthday party so I had shorts on. Lucky for me.......... there were extra poodle skirts to be had! Did I mention that it was hotter than, um, should I say blazes that day? Very hot. Nothing like a poodle skirt that's 3 sizes too big on a warm summer day. : )

My friend Pam and me- she organized the event

Lila's babysitting- well she thought she was!

Lila's all business as she "mans" the money table.

Could you excuse me a moment? I need to adjust my shades.

Okay, that's much better.

Honoring the survivors, remembering the fighters~

Linda

Better today

Lila's better today- thanks for all of the comments, facebook comments and text messages. We held off on giving her the Tylenol with codeine- any drug that makes other people go to sleep wakes Lila up. She needed the codeine for pain relief, though, so we have been giving it to her. (She goes to sleep eventually but she's usually pretty hyped up for about 45 minutes after she has the codeine.) It seems to be working as she only slept for 55 minutes yesterday afternoon- with regular Tylenol- and slept for almost 3 hours today. It's working much better for pain management. Long explanation, huh?

She's still not eating much at all but she's taking in plenty of fluids so she'll be fine. She's already lost some weight but I'm sure she'll gain it all right back. We are all very relieved that she's feeling better. Thanks for all of the prayers and well wishes.

Hugs~

Linda

Here's how things are going at our house......

Yup. Not so great. Please say a prayer for Lila- she's really having a hard time. Hoping tomorrow will be a better day.

Hugs~

Linda

Unfortunately.......

The doctor was right. Last night was a little rough and today hasn't been any better. Thankfully it's nothing out of the norm, it's expected after tonsils/adenoids are removed. We know it will be worth it in the long run.

Hugs from the tired family~

Linda

Gratitude Journal

I started a great book today called "Simple Abundance- a Daybook of Comfort and Joy". I wanted to share one of the quotes from the book:

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow." Melody Beattie

The book suggests starting a "Gratitude Journal". Every night before you go to bed you're supposed to list 5 things you are grateful for. I doubt I'll do it every day but I love the idea. The book suggests that as you begin to actively recognize the things that you are grateful for, an inner shift in your reality will occur. You will begin to feel more content and hopeful.

I figure it can't hurt so I'm going to try it!

Striving for more~

Linda

How about that?

We had a really good day. We didn't oversleep, morning traffic wasn't that bad and the schedule at the surgery center was running right on time. Everyone that we came in contact with was very nice. I got to walk Lila back into the procedure room and stay with her until she was sleeping. When she woke up she didn't cry like all of the other kids did. (Sometimes I wonder if she feels pain the same way other people do.) She was a little bit cranky after we brought her home but nothing like I expected her to be. She ate really well, too. She had 5 popsicles, applesauce, yogurt, avocado, cheese and blueberries. She loves to eat and a sore throat isn't stopping her.

Keeping Lila quiet/still isn't working. At all. She did pretty well most of the day- she'd try to get down and crawl around but then somebody would distract her with a book, puzzle or game. After dinner she decided enough was enough. She was sitting on the floor, rolling a soccer ball to anyone that would roll it back. And, of course, we all did. All of a sudden she stood up and rolled the ball. Then she picked the ball up, squatted down and rolled it again. Then she stood back up, rolled the ball and started walking toward it. She did that about 7 times- that's the most she has ever walked! She was having such a good time. She's moving very gingerly, but she wants to move. And what's with the new walking routine? Hey, kid, you just had your tonsils and adenoids out- shouldn't you be convalescing? No worries, everyone- someone is always right there beside her in case she gets a little too ambitious. It's wonderful to have my parents here- they are always such a big help and are a great source of peace and reassurance.

The doctor called this afternoon to check on Lila. He assured me that she will get worse. I hope he's wrong. I'll let you know.

Peace~

Linda

Thanks for praying!

Lila is home and doing pretty well. The procedure went very quickly and without any problems. We are so thankful! She only cried once in the recovery room and that's because she was mad at the nurse for holding her arm still when the I.V. was taken out.

Thanks, everyone, for your prayers and well wishes. It seems that the most challenging part will be keeping her quiet for the required 2 weeks. Does that seem like a long time to anyone else?

Blessed to be her mama~

Linda

A bit nervous

Like my new header? Thanks, Bethany! I'm not finished with all of the font and color changes but they will have to wait. A great distraction, though, as I am pretty nervous about tomorrow. Lila's having her tonsils/adenoids out and tubes put in her ears. We will be leaving at 6:45 a.m. to arrive at the surgery center at 7:45 a.m. Her procedure is scheduled for 8:45 a.m.- that's east coast time- please say a prayer for her.

Goodnight~

Linda

The beach

I'm so behind on posting pictures. About 3 weeks of birthday parties and other fun stuff. Hope to catch up soon! Here are some pics from our little weekend getaway- my nephew graduated from high school and we took a little trip down to Virginia Beach to join in on the celebration. It was either raining or overcast most of the weekend but we happened to catch a little "window of opportunity" on Saturday when it was absolutely beautiful. Lila loved the beach~ lucky for me because the beach is my # 1 favorite spot ever! I love the way the water looks as if it blends in with the sky and the way the waves sound as they crash against the shore. I would live there if I could.

Lila and her daddy- they were having so much fun!

Lila loved walking on the sand

My niece Denae, Lila and me

Playing in the wavesShe kept saying "More, more"

Peace~

Linda

Wordless Wednesday

Anonymous

Why do people leave anonymous comments on blogs? I guess it's okay when the comments are nice. But if they're not nice, and you don't have the courage to sign your name, perhaps you shouldn't be leaving the comment in the first place.

Just my opinion.

What do you do all day?

This weekend my husband and I were having a conversation about the moms living around us that don't clean their own houses. He's a very analytical person so he was asking a lot of questions. One of the questions was, "Well, what does she do all day?" Just then, in the blink of an eye, Lila opened a cabinet door and with a single swipe of her hand threw the contents of an entire shelf onto the kitchen floor. Talk about timing.

Nick looked at her, looked at me, shook his head and said, "Never mind. Forget I asked."

Gotta love it~

Linda