A One Week Snapshot:

Fetal Alcohol Syndrome and Natalie:

Natalie: "Mom, some girl socked me right in the eye on the school bus today".

Me: "Oh my word, you have a bruise! Did you do something to provoke the little girl? Were you arguing?"

Natalie: "No mom, I was just being her friend, and then she punched me. I never saw it coming."

Me: "Mr. Principal, I don't know what happened, but Natalie was punched on the bus and says she wasn't fighting or arguing with the girl that punched her."

Principal to Natalie: "Natalie, did you do anything to provoke the girl who hit you?"

Natalie: "No, I was just being her friend."

Principal to girl: "Did you punch Natalie in the eye?"

Girl: "Yes."

Principal to girl: "Why would you do that?"

Girl: "She was flipping me with silly bands."

Principal to Natalie: "Did you flip her with silly bands?"

Natalie: "Yes, but I thought she liked the game."

Me to Natalie: "Couldn't you read the girl's face and tell she wasn't enjoying being flipped with silly bands?"

Natalie: "Can you teach me how to read faces so I don't get punched again, because I only know how to read books."


Charlie and an extra chromosome:

Lydia, Charlie, and I meet some good friends for lunch this week. Charlie was sleepy after playing all morning and had a full tummy, so I decided to let him sit in a stroller while I enjoyed visiting with our friends (hoping little red-head would take a nap). After a while, I noticed he wasn't sleeping but seemed content to play with his hands. It wasn't until I put him in his carseat that I noticed at some point during lunch he had reached into his diaper, pulled out a "poo poo ball" and rolled it up into his hand to squish. Content? Yep.....content and playing with a "poo ball" during lunch. I am sure there are LISTS of health codes against that!!!

Hope, an extra chromosome and a heart defect:

I picked Hope up from preschool today and learned she had not wanted to eat any food or drink any liquids all day no matter how much the teachers attempted to coax her. In addition, her teachers said she plopped herself on the ground during playground time and wouldn't play. After hearing the report, I scooped the little bundle up and made a quick stop by McDonald's for some famous french fries to tempt the hungry one to eat. McDonald's always works, but not today. Upon entering the house, I quickly turned on Elmo and wrapped her up in a blanket to cuddle on the couch. Hope not only shunned McDonald's, but she also shunned her favorite red monster. My sweet girl has no words yet, so she is unable to communicate her feelings to me.....therefore, I am left to fret and worry...which I have done since 12:30 this afternoon. "Could it be her heart?" I fear. "No, she is probably catching a cold or something", I quickly decide, but then am quickly checked by my own heart and emotions: "What if?" This will be another sleepless night......

Life with Special Needs Kids can be summed up with four words:
1. Never
2. A
3. Dull
4. Moment

In my quest to read classic novels this year, I have just completed "Jane Eyre" by Charlotte Bronte. The book is a rare gem loaded with colorful characters that rivet the reader and give cause to consider several relevant spiritual matters. I cheered for Jane, an orphan, throughout the entire book, yet my mind was thrown into a tug-of-war as I found myself wanting her to remain true to her faith while at the same time desiring her to have a taste of real living.

I came away with this:

If I had been placed in Jane's poisition, I am certain I would never have achieved the level of integrity that she maintained. Her love for "right" transcended her every action, word, and deed though emotionally, she often struggled. Jane's very nature was to stand up and speak out; however, she learned, through much practice, to honor God with her actions through love, humility, servanthood, patience, kindness, and self-control.

Unlike the great Jane Eyre, I am not a heroic fictional character. Truthfully, I have more faults than could possibly be listed on a blog page, and too often, my emotional struggle leads to sin. My worst struggle? selfishness. Daily, I have to consciously slaughter the evil enemy of "It's All About Me" and remind myself that I am but a tool to be used by the Almighty to help others....a servant. Most often, the enemy wins and I fail.

While you might pick up this book for wonderful entertainment, be warned it will stick the knife of conviction in your back when you least expect it. I dare say, there is not a female alive who could read this book and not compare herself to Jane and then desire to strive to be more like her.

Hope's birthday began with a great big celebration with her pre-school buddies!

The cake was a big hit!

Hope LOVES all of her teachers

and friends at

Moore Elementary School!

Next it was time to go home and ride the battery operated motorcycle Caleb bought for her.....

And get a wagon ride from Lydia.....

Followed by dinner at her very favorite restaurant: "Macaroni Grille" (Perhaps the best Mac 'N Cheese in town!)

Then to top off the day.....plenty of lovin' from the fam:

Happy 5th Birthday to the sweetest girl in the whole world!

Five Years of Hope---words from Caleb, Lydia, and Natalie

Five years ago, I was in a hospital room delivering baby Hope. She and I both came dangerously close to death in those early morning hours; and following her birth, I was told I could expect to touch her and hold for only a few days....a month or two at most. How incredible it was to be told our baby was expected to die. Frightened beyond belief, I trembled each time I looked at Hope and hated myself for being afraid of my own flesh and blood. After a month in NICU, Chappy and I walked out the doors of Vanderbilt Hospital and took Hopey home; upon leaving, we were again warned she could die suddenly without warning: "Just be prepared" were the only words given to console. Throughout the terror-filled nights that followed, I chose to forgo sleep in order to watch my baby's every breath. I was determined to be by her side when she crossed into the heavenlies to meet her Creator, the Lover of her soul. Thinking back, I remember praying aloud with tears dropping from my face onto her bundled up sleeping body: "Lord, are you going to take her tonight? Please, won't You give me just one more day?" Ironically, I still pray that same prayer sometimes now....five years later. (Thank you so much, Lord, for five years!)

The first year of Hope's life marked the most difficult of my life; but finally, after seeing that Hope was determined to beat the odds, the doctors relieved me when they exclaimed: "Hope is obviously going to follow her own rules, so we aren't going to give you any further predictions about her life expectancy." (smile) That has proven to be Hopey's motto. For anyone who really knows our girl (Moore Elementary, I am especially talking to you).....she definitely marches to the beat of her very own drum. Ha! Ha! Head held high, that girl rallies those short little legs into high gear and marches (expecting everyone in her path to march too!)

Following a stomach surgery, eye surgery, three open-heart surgeries, and an aneurysm that continues to grow in Hope's heart, we find ourselves on the eve of celebrating our miracle girls' fifth birthday. My heart is full. I will post pictures of her birthday celebration tomorrow, but this evening, in anticipation of tomorrow, Caleb, Lydia, and Natalie have asked to honor Hope by sharing their hearts about baby sis:

From Caleb (big brother):

Hope,

The light of my world.

The strongest person I know.

The most pure and innocent little heart ever created.

You are my girl; no one on earth will ever take your place in my heart.

The spot you hold with me is too special.

You are the primary reason I fight and do my best in all aspects of life.

It is hard for me to believe you are turning 5; you are and will always be,

my little "inspiration". Happy Birthday. I love you!

From Lydia:

Hope,

You might have Down Syndrome, but you are a beautiful angel to me. If you had not come into my life, I am afraid I would have become a selfish person who was not humble at all. You have taught me so much, and you are just a little girl. It is amazing. I cannot describe how much I love you. It is truly something crazy. People may stare at you and make snappy comments from time to time, but those people just need someone like you in their lives. You could teach them about blessings. Truly Jesus didn't make a mistake when He made you. I am blessed to be called your sister, and I love you Hope! Happy Happy Birthday to you.

From Natalie:

Hope,

Ever since you came into the world, you have been happy. I don't care if you have Down Syndrome, you are a sister who I adore. To me, there is nothing wrong with you. Without you, I don't know what my life would be. You are an angel. You are a blessing to me. I love you Hope with all of me!

And to close:

From a momma and daddy who happen to be madly and insanely in love with a feisty little green-eyed girl in pig-tails who has the brightest smile in spite of the extra-chromosome that makes life a bit difficult to manage: "You keep right on marching sweet girl! We will plan to celebrate number six, same time next year!"

"Love never gives up....it cares more for others than for self."
















"Love doesn't want what it doesn't have."
















"Love doesn't strut or have a swelled head; it doesn't force itself on others."
















Love doesn't fly off the handle or keep score of the sins of others."
















"Doesn't revel when others grovel"


















"But takes pleasure in the flowering of truth."
















"And it does trust God always."
















"Love looks for the best and never looks back."
















"Love keeps going....
















to the end."










Have You Loved Someone Today????

(From: "The Message"---1 Corinthians 13)

"It's Hope!"

This morning, after Hopey's morning bath, I lifted her in my arms wrapped up in a big old towel and allowed her to peek at herself in the mirror.





"Who's That?" I asked.





"It's Hope!" was her reply.




Today, for the first time, Hope said her name.




Thank you, Lord!

Free Speech. Our First Amendment Right.







"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of happiness"....the Declaration of Independence.







Hopey is one of God's creations; however, handicapped people are seldom treated as "equals".







In fact, over the years, people like Hopey have been forced into institutions, tied to chairs against their wills, locked in rooms until their bodies are bruised from attempting escape, used as experiments, over medicated, sterilized, and sexually abused. For them, education has been something fought for while pity is something fought against....friends are a gift longed for while bullies are a dreaded part of everyday life. An overwhelming majority of these precious ones are still aborted every single year, because they are portrayed as "baggage" by far too many in the medical community.







Free speech affords us the right to use derogatory words that hurt others, but that does not mean we should utilize the freedom. The "R" word is in the news again. It should be "old news" by now.