Tuesday, November 23, 2010

McKenzie's 5

5 years ago, I was given the most precious gift ~ McKenzie Raye.  I had waited my whole life for this baby but had no idea just how much this little one would change my life.  Her entrance into the world was a rocky one.  She was whisked off to the NICU with daddy hot on their heels.  She was 7lbs and 7oz ~ 100% fighter.  McKenzie was born with an unnamed chromosome disorder.  She has challenges but almost always has a smile on her face.  There are some really tough days when you are the parent of a child with special needs.  More doctors than you care to juggle.  More therapy appointments than can possibly be scheduled in a week.  Sleepless nights either because they are awake or you are awake waiting to hear a noise.  You have to learn how to navigate questions, comments and looks, and accept a completely different way of life than the stuff you imagined.

The great thing about having a child with special needs is that you find the best doctors.  You are taught physical, occupational, speech, and other types of therapy.  You become very organized ~ because your priorities change. You are able to navigate questions, comments and looks ~ sometimes with grace ~ sometimes with sarcasm!  You welcome a completely different way of life.

The best part... you find people that love their children for everything they are and are not.  Parents that truly celebrate each and every milestone. People with huge hearts that would do absolutely anything for your child.  It's never about where you live, the car you drive, your job title, how many vacations you take... it's about waiting for that first step, that first word, sorting colors, coloring for more than 10 seconds, grabbing your hand to communicate their wants, signing "more" when swinging and listening to the most awesome giggle in the world. 

I love you

Happy Birthday McKenzie!!! 

Monday, November 15, 2010

10 Reasons to Give Thanks for Your Child with Special Needs

1.  You never have to worry about worrying over nothing.  Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something to worry about.

2.  Developmental delays = more years of hugs, kisses, and the little-kid sweetness.  I love being able to still cuddle McKenzie and at her rate of growth I'll always be able to cuddle McKenzie.

3. Maybe someday, Ty Pennington will come build you a house!  Extreme Makeovers: Home Edition loves families of children with special needs.  Your little one may be your ticket to a lavish living space!  Although in our case, daddy built us that living space... I need Ty to finish it!

4.  Any little milestone is a cause to throw a party.  Your child works so hard for every step, sit-up and syllable, giving you lots to be excited about.

5.  Every day is a learning experience.  Some days it's a pop quiz, some days it's a crash course, but life with your child is always and education.  Since becoming a mommy I've also become a therapist, doctor, nutritionist, transit authority, lawyer...

6.  You have the privilege of putting several doctor's children through college.  Someone once asked me how I had a certain doctor's cell number.  I simply replied "It's one of the perks of paying his mortgage and car payment."

7.  You meet a better class of parent in waiting rooms and support groups  Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.

8.  You have an iron-clad escape excuse for any occasion.  You'd love to stay at that boring party, crowded event, endless church services, but, you know, your child just can't tolerate it.  It also moves you to the front of the line at Disney!  I overheard a little boy tell his mother "Thank goodness we have her with us!" as they approached the long line.

9.  Coming up with new strategies every day keeps your brain sharp.  They say doing crossword puzzles helps ward off Alzheimer's.  Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.

10. Your blessings will always be fully counted.  You will never take for granted a gift that your child brings to you.  Not ever.

I found this awesome article written by Terri Mauro (http://specialchildren.about.com) and had to post with a little of my own experiences. Thank you Terri for this great list!

Thursday, October 7, 2010

Same View Different Eyes

Almost six years ago, I lost my mother, who was 83, to breast cancer and Alzheimers.  Recently, a very good friend reminded of a funny story. Without keeping my humor I would have never survived the pain.

One evening, my family was at an Italian restaurant for dinner. My mom leaned over and said pointing "That man over there is staring at me." Knowing the in's and out's of Alzheimers and having children of my own, I smiled and said "Don't worry about it mom, eat your dinner - don't point."

Time passed and again she tells me with a little more force "That man over there is staring at me." "Mom, please don't worry about it, eat your dinner he's probably not even looking at you." "Oh, yes, he is!" my mother tells me.

This time with anger, she tells me "JULIE ANN!!! That man is staring at me and I'm going to go say something to him!!!" "Okay Okay Okay! I got it!!!" I stop her from leaving the table, but now I have to go confront this man. Being the good and concerned daughter that I am, I nervously ask my mom to point out the man staring at her.

Let me tell you.... I marched right over to this man, that happened to be the carved butler statue standing at the entrance of the restaurant holding wine glasses and a bread basket, demanding that he quit staring at my mother! The owner of the restaruant was happy to turn the butler statue in a different direction until we left.

To often we are quick to judge a dress hanging in the window, a person, a job opportunity, a relationship, a friendship - based on the way we first see it. Something or someone could change your life, but you won't or didn't take time to really see it. You already "knew all about it" or "all about that person", and possibly missed the opportunity.

My mom adopted me when I was four days old. My mom put me on the school bus every morning. My mom tied my shoes, combed my hair and gave me style.  My mom raised me in church.  My mom taught me to laugh, love, live and lie about your shoe size.  My mom taught me to have the same view with different eyes.

I love you mom!

Thursday, September 2, 2010

Don't Let Frustration Get You Down!!!

I thought that staying at home would be a piece of cake!  I work 40 hours outside the house plus travel time, and get everything done.  I'll have plenty of time to myself.  NOT!!!  Do you think Ms. Cunningham was mixing a cocktail at 4p, too?  Being a stay at home mom can be tough and the best thing in the world all at the same time.

FATIGUE.  Starting the day with little ones... wrestling on their clothes, and the list of instructions - brush your teeth, comb your hair, tie your shoes, get your back pack, eat breakfast, get the the car, turn off the tv..... where the heck was my COFFEE I'm EXHAUSTED?????  You don't necessarily get a break when you want one!  Just when I get both of the little ones down for a nap, and I can relax for a minute, anxiety kicks in and I'm off to the races to get things done.  If you're feeling worn out, don't use naptime to rush through chores.  Recharge your own batteries while the kids are recharging theirs.

GROUNDHOG'S DAY.  It's okay to say it... it get's boring! Try new activities, especially things that get everybody outside. Schedule another playdate but with new people.  Do things together as a family that everyone - including Mom - enjoys.

WHERE'S THE CASH.   It's not what you make, it's what you spend.  Don't fall prey to instant gratification, which steals your precious dollars.  If you've been cutting back and still can't make your bills, consider a part-time job. Your kids will not benefit if their parents go bankrupt! 

ANYBODY?  ANYBODY?  It's great to spend time with other moms at the 1,000 activities designed for kids, but what about you? Join Mom's Circles or something so that you are interacting with women who have made the same choices can really brighten your day. 

I MISS WORKING.  I did!  There's no reason you can't get the satisifaction of holding a job while being a stay at home mom, which also helps build strong communications with other moms throughout the day to avoid being lonely.  Find balance with an at home business that won't take up all of your family time.  Giving your selfesteem a boost helps everyone in the family. If Mom's Not Happy, Nobody's Happy!

Surround yourself with supportive positive people!!  When all else fails, give your kid a hug.  Reinforce to yourself again just why you made th choice to stay home.

Thursday, August 19, 2010

NOW in Control

People tell me all the time that I must be a "strong person" to have been giving a special child.  Like, God just pointed down and said... Yup, Julie can handle it I pick her!  Realistically God told me to get my priorities in check! 

It was my priviledge this past week to be included in a Leadership Training Session with Hyrum Smith.  He didn't know it, but he explained how I am able to be a "special mom."  Simply - I'm forced to do the daily activities that most of us put off to another day.   I lost the title of "President of Control Freak Division" on November 26 ~ the day McKenzie arrived.   When you try to control everything, especially trying to control something you don't even understand, life becomes out of control.  Took me 40 years to admit it!

I don't consider myself any different than everyone else.  We all have issues ~ we all have families!!!  Seriously, we all deal with challenges in life and we all see life in different light, but when there is an event we CAN control, and we start believing that we CAN'T control it, but if the need is big enough and WE CAN MAKE ANYTHING HAPPEN!!!   Being the parent of an exceptional child proves to me everyday that I CAN make anything happen because SHE needs me to make it happen! 

Inner Peace ~ Having serenity, balance & harmony in our lives achieved thru the appropriate control of events.

Friday, June 18, 2010

What caused McKenzie's Chromosomes to Break?

The Physician and Specialist Response:  Unexplained (a/k/a "We don't have a clue.")
The Invitro Medical Response:  "It happens ~ that's the risk you take."
The Genetic Response:  "You just got what you got."
The Parent Response

Saturday, June 12, 2010

Therapy for McKenzie & Disney

We had an appointment with Debra Beckman, Oral Motor Specialist, in Orlando, Florida and who can't use a vacation?  It's not easy traveling with children, but traveling with a special child can pose some challenges.  McKenzie is glucose intolerant, which eliminates all of the fast food restaurants for traveling (except for Pei Wei, which prepared her the perfect meal).  Omni Champions Gate was very accommodating to her medical and nutritional needs. 

If you are traveling with a special child to Disney, check for handicapped services.  They are very accommodating, but make sure you tell them all of the challenges you will have in touring the park.  There are different "passes" which we found out a little later in the day.  Overall... amazing day with the kids, Buzz Lightyear, Pooh, Tiger, Piglet, Aladdin & Magic Carpets, River Boats, Tea Cups, Carousels, etc.  There is an iphone app I highly recommend for planning your day at the park - Got Plans and make reservations at the park restaurants.

The best part of the trip ~ meeting Debra Beckman.  Why isn't McKenzie talking?  Because she couldn't possibly talk with her lack of oral motor skills.  You would have thought after four years, a cochlear implant and 9 speech therapists someone would have focused on this?  Thank you University of Miami for pushing me to meet Debra.  She provided instruction therapy to do at home with McKenzie, and expects McKenzie to start making different sounds in less than a month!!  McKenzie's speech therapist now... drove right up there for training ~ don't you wish she was yours!!! 

The Shoe Fits!

I'm not living the fairy tale I dreamed as a little girl. It's BETTER than I could have imagined!

David & I have been together for 20 years, with four wonderful kids that have all been special in their own way. When we had our daughter, McKenzie, life changed for all of us. The phrase "kids don't come with a manual" didn't even touch the surface when taking care of McKenzie! She has taken us on a very special and sometimes difficult adventure.

We feel blessed to remember what is really important in life and to value the importance of family time. Leaving my "career" was difficult for me, but McKenzie gave me the directly I needed.

I now work from home helping others do the same thing. It's so rewarding to help people reach their financial goals by showing others a way to get fit, get health and provide financial security for their family.

The true fairy tale came true because I made it happen!

Follow us on our journey or join our adventure!


Are YOU ready for a CHALLENGE?

Are YOU ready for a CHALLENGE?