Change...is....HERE

You can avoid having ulcers by adapting to the situation: If you fall in the mud puddle, check your pockets for fish. ~Author Unknown


It is 6:05am on January 7th, 2011 and I just got the results of a pregnancy test that I took yesterday and it said:  POSITIVE!

Guess we will be expecting a new little person!

Physical Therapy?

In 2006 I was told that my daughter could get some additional help from an organization called CCS.  Based on the fact that she has ATAXIA, it is almost a given.  When I filled out the application and mailed it in, I received a letter that said she was DENIED services.  Their reason for denying her was due to the fact that she was only on 1 medication to control her seizures!  ARE YOU SERIOUS?  She was denied because they said that she wasn't SICK ENOUGH.....They never even mentioned the Ataxia.  After I started to discuss the situation with other moms and some teachers, I found out that maybe I didn't stress the "right" stuff on the application I filled out.  I really don't understand that reason though.  IF A CHILD NEEDS therapy, why in the world would you make all of this red tape?

WELL, now we are in 2010 (well really we just started 2011, but in October of 2010) I was FORCED to apply for CCS again, by another organization that doesn't want to pay for our therapy any longer.  I almost had my application walked-thru the system, and it was approved. HMMMM, what exactly does that mean?  I didn't have enough connections in 2006? 

After months of waiting to see if we were going to get additional services, I found out that we were approved for Physical Therapy 1x/wk.  WOW, for as much as I am griping, I really am happy that my daughter gets the services she needs.  BUT SHE NEEDED THEM 4 YEARS AGO, as much as she needs them now! 

I guess that is really my problem.  NO ONE has ever told me that she doesn't NEED therapy, they just tell me that they won't pay for it.  SO FRUSTRATING.  THESE ARE CHILDREN!  Stop paying for people to leach off of the system and take care of the people who need it most.

Why, as parents of special needs children, do we have to work so diligently to get the help we need? Why can't someone other than us, have our children's best interest at heart? 

Me

The toxins I put into my little one

Yesterday, I was having a discussion with a family member about medications that I give my daughter.  It was sparked, because this person is about to have a major surgery and had a meeting yesterday where she had to bring ALL of her medications to the meeting (this is probably the 5th time she has had to do this in about a week).  In the discussion, after I listened to her complain about it for a little while, I told her my thoughts. 

The doctors do this for a reason, NO I am not a doctor, but I can give you my best educated guess about why they do it.  First, check and double check....I am sure that they don't want any surprises about what you are taking and to the average person, there are probably only a couple of meds.  But, to some, there is a laundry list of stuff they take.  This family member takes about 15 medications A DAY.  The Doctors want to be SURE, you told them about everything......

But, while having this discussion, I brought up a recent news article I saw on 60 Minutes about GSK, one of the LARGEST pharmaceutical manufacturers in the world.  They had some major problems, FOR MANY MONTHS, making and mislabeling medications.  They told the story of a little boy that was taking a 10MG medication and one month the pill color changed (but the bottle information didn't) and the next month the pill color changed back....come to find out, he was taking a pill that was 25MG for a whole month! For a child that is serious concern....

My daughter takes medications to control (or not control, because they aren't working very well right now) her seizures.  She takes anywhere from 2-4 medications 2x per day.  On December 5th we changed from one medication to a new one, but this new one is not working properly (and it is making my daughter a walking ZOMBIE) SO, we are changing to yet another new one. 

WHAT IF, she was given the wrong dosage for her new medication....I would NEVER know.  That is so scary.  I try my best to stay on top of her medications, but I am not an expert, I AM ONLY A MOM.  Some days I wish I had super powers.

If I think about the meds I have given over the past few years, it is downright nerve wracking.  I gave a medication to my NEW BORN baby that was 14% alcohol....I gave my toddler a medication that literally stopped her from sweating, she couldn't regulate her own body temperature.  I had to carry around a squirt bottle to keep her cool on hot days.  I am taking her off a medication that causes LIVER damage (this is one that my husband is particularly scared of).  I am putting her on a new one that causes SEVERE RASH if you go on or off the med to fast.  It is so severe, that it will take 7 WEEKS to finally get her fully on the new medication, by the way, this NEW MEDICATION IS MANUFACTURED BY GSK...OH and did I tell you the one that we are coming off of causes liver damage (almost for certain) if you take 3 seizure medications at the same time?  Right now she is taking 2, tomorrow she will be taking 3 (for the next 7 weeks, until she is fully off the old one and on the new one)...

BUT, the alternative is mounds and mounds of seizures, more than the 20-30 we see right now....SO, I have to give her these poisons and hope for the best.  I have to pray that her body can handle the medication and pray that I will be able to tell if something goes wrong.  Doesn't that seem like a lot of pressure? 

ME

Happy New Year

It is the beginning of another year and I have been thinking about some of my past posts....I LOVE reading them.  I love reading the funny ones, the happy ones, and I really LOVE reading the sad ones.  No, not because I enjoy being sad, but it reminds me that things aren't hard all of the time, just sometimes.  It reminds me that there are struggles and then there are triumphs.  Mostly I love reading the posts about things that I have forgotten, because we all know that I am not getting any younger and my memory isn't the greatest.  Life goes so fast that most of the time I can't even remember the beginning of the day by the end of the day, LOL.

I am going to try really hard this year to journal more.  I think it is important for ME to be able to look back and remember where I have been, in order to see how far we have come.

A Little Bit of BRILLIANCE!

 

BRILLIANCE:  extreme brightness or radiance; imposing splendor or magnificence

I have never really thought of myself as a writer, and I guess this blog proves it.  I always think about writing, believe it or not, but most of the time I am keeping up with the little time passers that make life so interesting.  I really do wish I was a better writer, but I am not….I am too busy playing MOM :)…I am a good mom so that probably makes me feel a little bit better about the fact that I am not great at everything else.

Today I watched the movie Eat, Pray, Love and it got me thinking.  How many people do you think have watched that movie wanted to order a pizza and build a meditation room, LOL.  Although the movie reminded me of someone very close to me, I can’t believe that I finished the movie with an abstract plan about how to start meditating.  IF ONLY I HAD MORE TIME.

The funny thing is, a few minutes later my kids were running through the house playing tag with the dogs.  I have to admit I haven’t ever experienced the game quite like this.  My oldest had a friend staying the night and my youngest doesn’t get the rules of the game very well, so the girls all decided to include the dogs. I think they figured it would make the game a little more fun.  The dogs thought it was GREAT, running though the house wagging their tails and tagging people.  I watched them all giggle and play together and it made me smile. 

Some days being a Mom is hard work, other days it is just plain daunting.  A Mom of a special needs daughter, has moments that just break you down to the core and ask, “why do kids have to go through this?”……Other days life has a BRILLIANCE that can not be expressed in words and you are touched deep into your soul, and for just a moment…..EVERYTHING IS PERFECT!  Today is a Brilliant day.  Who knows what will happen tomorrow, but for now I am radiating love and happiness from the inside out.

Me

“You know how when she looks at you; she reaches deep into your soul and just makes you happy” ~ My daughter talking about her sister

The struggles of a Special Parent

This week has been rough!  My girl started kindergarten and I am not sure I like her new class.  Actually, I think I am being a little moody and irrational right now, but sometimes I am allowed to breakdown……I am ONLY HUMAN.  Yesterday, was a terrible day.  Thank goodness for DAD’s!  I called my dad and unloaded all of my PITTY PARTY luggage onto him, thank goodness he doesn’t hold onto any of it.  In fact, it was refreshing to have him laughing at some of the stuff I was telling him. 

It made me feel a little better to know that HE wasn’t as upset as I was, (and God knows I was upset) about all of the crap that I was sharing with him. 

Sometimes, as a special parent, it feels very lonely.  I don’t really want to share what is going on inside of me, in fear that people won’t understand (which in all actuality THEY WON’T).  I don’t like to overload my hubby either, which in turn means that I deal with “it” and keep moving on to the next obstacle.  THIS MAKES FOR A PRETTY LONELY FEELING SOMETIMES.  Every once in a while, I build up enough pressure to erupt Mt. Shasta and BOOOOOMMMM!!!  I EXPLODE.  Thank goodness my dad was home……he allowed me to explode on him, made me feel better and ultimately he got me laughing at the end of the conversation. 

I wish things were different sometimes….is that wrong?  I love my life and MY LITTLE LADY, but there are times that I ask myself WHY.  AND, when I look into the deep dark tunnel of the future sometimes, I wonder how in the hell I am going to do this for the rest of my life.  AND….when my life is over…..who is going to protect my little girl? 

THAT THOUGHT ALONE is enough to make me cry. 

Some Mothers Chosen By God

 

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew.
"Forrest, Marjorie, daughter. Patron saint, Cecelia.
"Rudledge, Carrie, twins. Patron saint… give her Gerard, He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary."

"When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see… ignorance, cruelty, prejudice… and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

Written by Erma Bombeck

High Fever = No Sleep for Mom…

This weekend was a fantastic weekend (we went camping)!  I love watching my little one roam without all of the restrictions.  She gets to take her own little adventures without the worry of cars, hazards or anything else.  She gets to ride her bike….which is pretty awesome because the “experts” didn’t even think it was going to be a possibility….not anytime soon. 

We ended this weekend by contracting a flu bug…UGH…I hate it when my little one gets the flu.  A high fever in my house means seizures, worry and no sleep.  I think my little one had about 30+ seizures last night, it is hard to count when I am in a state of delirium from lack of sleep…not to mention the couch isn’t very inviting when sharing it with a 6yr old.  At one point she even kicked me in the face while she was having a seizure.  It is absolutely heart breaking to watch her seizures….it is even more heart breaking when the seizure if over and she comes back to reality….sees me hovering over her, holding her hand and…..she smiles and says “MAMA”….one of the only words she know how to say.  It is as if she is telling me it is alright, but I can’t say that it makes me handle it any easier.  It does make me smile deep inside, because it shows me how strong my angel is and it is a simple reminder about what is important.

Right now she is still asleep….I hope this flu bug passes quickly….

The Potty Training PROCESS!!!

When was the last time that you had to potty train your little one?  For me it has been quite awhile ago.  My oldest was potty trained before she was three.  Potty training my little M has been quite the process!!!  AND I MEAN THAT WITH ALL MY HEART! 

We started our venture about a year an a half ago….YES…I said 1.5yrs ago.  UGH..it has been a long time.  For those of you that have a special needs child you know that the typical “potty training rules” do not apply to us.  I can’t bribe my daughter to use the toilet, I can’t punish her for not using the toilet.  I can’t yell or threaten or say “THE NEXT TIME YOU PEE YOUR PANTS I’M GONNA…”….NONE of that will help.  The only thing that REALLY helps is positive reinforcement…..have YOU ever tried to stay positive for a year?  IT IS HARD!

I met with a behavioral specialist at the beginning and she prepped me for this long hard journey…….little did I know then….BOY WAS I GONNA NEED IT!  She was fantastic though.  She taught me the basic teaching techniques and they are pretty simple.  Putting them into action has been the hard part.  BEING CONSISTANT….When you are a mom, you are most often RUN DOWN…..doing all of the little life things that make the world turn around.  When  you are in potty training mode…..EVERYTHING CHANGES…..

I have LIVED in our bathroom for the past year.  I am not even kidding!  I practically have a bed in there. 

It makes for some pretty interesting, gross, funny stories though!

here is one….

One day, while working on a big fundraising campaign, I got a call from the local news paper!  A reporter wanted to interview me….I WAS SO EXCITED.  In the background my kids were playing and running through the house…nothing new right?  WHEN ALL OF A SUDDEN….I hear….

MMMMOOOOOOOOOOMMMMMMMM!!!!  It was my 9yr old, she would only yell like that if something WAS REALLY WRONG.  Trying to remain composed, while answering this reporters questions, I followed the yelling…..

I get to my daughters room, with a finger up to my lips giving the universal sign for SSSSHHHH……and she said quite loud “EEEEWWWWWW!  THAT IS POOP!” (sorry I know that is gross).  I followed her eyes and saw the disastrous mess! Panicking, and keeping up with the reporters questions (because, I couldn’t very well tell they guy that my potty training child has struck again) I picked her up by the arms and took her into the bathroom, stripped her down and hosed her off….all the while, never skipping a beat with the interview……

The interview ended about the same time that our impromptu shower did…AND I STARTED LAUGHING!  Probably a little hysterically…because my oldest said “mom are you alright?”.  I realized then that it really takes a SPECIAL Person to be a mom to a SPECIAL child.  We never let our challenges stop us, they just make us change directions.  Life, as I know it, is NEVER boring!

…the next day, I got the paper and my interview was in it…and I didn’t do to bad.  I am sure the reporter heard the chaos in the background, but never asked if everything was ok…THANK GOODNESS, because in the moment, I am not sure what my answer would have been….

CHEERS! 

What Matters Most?

I was running through some old papers and this one stood out. I wonder if you will slow down or change course?

***

A few years ago, at the Seattle Special Olympics, nine contestants, all physically or mentally challenged, assembled at the starting line for the 100-yard dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish and win. All, that is, except one little boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and looked back. Then they all turned around and went back….every one of them One girl with Down’s Syndrome bent down and kissed him and said, “this will make it better.” Then all nine linked arms and walked together to the finish line. Everyone in the stadium stood, and the cheering went on for several minutes. People who where there are still telling the story. Why? Because deep down we know, that they know, the one thing that matters most in life. What matters in life is more than winning for ourselves, what matters in life is helping others win, even if it means slowing down and changing our course.

“A candle loses nothing by lighting another.” ~ Author Unknown

Counting My Blessings

You don't choose your family. They are God's gift to you, as you are to them. ~Desmond Tutu

Yesterday pretty much sucked. I think the emotional roller coaster that I felt was just because of the change of "season". The new schools, new moms to meet....new stuff bothers me. I like it much better living in my own little bubble. I know it sounds pretty funny, because if you know me, you are probably shaking your head right now in disagreement. BUT REALLY PEOPLE.....I am a HUGE chicken for new things.

BUT....

THAT WAS YESTERDAY. It is amazing how much things can change in one day. I woke up this morning and I had little reminders about how wonderful things really are! For as much chaos as we have in our day to day life, we are so blessed. I am so blessed. I thought I would share some of my blessings with you.

1. I am blessed to be married to my VERY best friend. We have been married for 10 amazing, wonderful and exciting years. He is a wonderful friend, husband and father. I think back to when we were dating and I can easily see how much we have grown....together. We are two of the same. It really is wonderful. I'm not crazy, we have our moments also....you know the ones I am talking about. The little fights that happen for trivial stuff. The ones that seem like big deals in the moment, but you probably won't remember them in a month. That is NORMAL....but, in the big picture....I am so very blessed to be married to one of the greatest men I have ever had the pleasure to know. He is my husband and best friend.

2. I am blessed to have a brilliant, beautiful and amazing daughter. My little "L" is magnificent. She is kind and understanding. She is patient and persistent. She is smart and beautiful. SHE IS DANGEROUS...LOL. That was the mom in me coming out. I watched her walk up to me the other day, in her casual, no big deal fashion, from across the school yard and I had this weird out of body experience. I looked at her and thought "look at that beauty, wow! When did she get so big?" She has a wisdom about her that amazes me and the time that we spend together is so remarkable. I look into her eyes and feel her passion for life. I listen to her speak and hear her humor and wisdom. I watch her help others when they struggle. I watch her help her sister learn how to play "hide-n-seek" in the cabinets. She is AMAZING and I am so grateful to have her as my daughter. I can not wait to see what life brings her.

3. I am blessed to have the very special and amazing gift from GOD Miss. "M". I watch her bring peace and happiness to EVERY person she meets. I watch her triumph over little challenges that she is faced with daily, but never complain about any of it. I think she is a beacon of light. She is wise and has taught me patience in a way that can not be described. She has taught me not to care about what others may think....it doesn't matter. I look at her and wonder why I was chosen to be the mother of someone so special. SHE is brave and daring, beautiful and modest, kind and patient, determined and happy......I feel honored to be part of her life path.

I AM BLESSED......

The family. We were a strange little band of characters trudging through life sharing diseases and toothpaste, coveting one another's desserts, hiding shampoo, borrowing money, locking each other out of our rooms, inflicting pain and kissing to heal it in the same instant, loving, laughing, defending, and trying to figure out the common thread that bound us all together.

~Erma Bombeck

Miss. Sassy-Pants!

We just started school (well it actually started last week, but today is our first full week). It is amazing to me that I still get chocked up. I'm not exactly sure if i am chocked up because I HATE new things, and starting out a NEW year sends me into turmoil or, is it because I am watching my kids grow up WAY to fast? I absolutely, positively....100% Love my kids and having them with me through the summer and letting go at the beginning of the year is VERY HARD.

So this morning we are starting our routines again. Trying to get back into the swing of things....The wake up at 7am, shower, breakfast, make lunches, brush teeth....then run out the door and join the rat races. We made it as far as breakfast and my quick moving train came to a screeching halt. Maddy decided that she wasn't going to take her medication. This is a little more than the "please take your Motrin because you are running a fever" stuff. Have you ever pleaded with your kids over that grape flavored cold/flu medication? Imagine giving your kids medicine EVERY DAY 2x a day. She takes two of them, they are the medication that controls her seizures. THEY ARE VERY IMPORTANT. She clamped down her lips and wouldn't open her mouth. I tried to pry them open with my fingers, I tired to bribe her with food, I tried to make her laugh, I tried begging.....didn't work. She just looked me right in the eyes and pucked her lips and protested the dreaded medication....Talk about breaking my heart!!! Finally with tears in her eyes, she GAGGED down the meds. UGH....if only it could be easier. Does she understand that if she doesn't take this stuff she will have hundreds of seizure.....how do I teach her with out really letting her experience the effects? Reasoning with a 5yr old just doesn't work. I guess I will continue my quest for yummy things that I can hide it in.......

"It is not until you become a mother that your judgment slowly turns to compassion and understanding." - Erma Bombeck

Our Vegas Trip!!!

First and foremost, we would like to say THANK YOU! In a little over two weeks we raised almost $2,000.00. Thank goodness, because it cost about $1,400 to get us to Vegas and between the taxi’s we had to take and the food it was a little more expensive than we originally thought it was going to be. If it were not for ALL OF OUR FRIENDS AND FAMILY this trip would not have been possible.

This has been quite an emotional time. For a family like ours that keep our private matters private, it has been quite challenging sharing this with all of you because, as you can imagine….it is our raw emotions. We didn’t realize how little we share about our “life” and our daily struggles. It isn’t because we don’t want you to know, but more that this is just our life. We don’t really think of it as anything but that. During this process it became very apparent that most of you knew something was “challenging Maddy” but very few of you knew exactly what. Most of you were even afraid to ask, because you didn’t want to upset us. In the future if you have any questions, PLEASE feel free to ask. We love talking about our kids, as much as anyone else and even if it is a little challenging for us at times to find the words without the emotions, we would be more than honored to share our story.

NOW….ON TO THE VEGAS UPATE!!!

I am so excited to share all of the details with you. This was probably one of the most amazing experiences we have ever had. I am going to focus my story on Madison, but that doesn’t mean that Lexi didn’t have an absolute BLAST, she did. This was amazing for both girls.

The Flight!

Our adventure started on Saturday at 6am…yep, it was an early start for the girls!!! We went to the airport and loaded the plane. When we got on the plane we decided to send Dad with Lexi, and Mom with Maddy (3 seats per section)….who ever invented planes didn’t think about the fact that most families are 4????? Maddy got to sit by the window and she was pretty amazed looking out at the workers load the luggage. I sat in the middle and hoped that an understanding person would sit next to me, mostly because this was Maddy’s first real flight and I didn’t know how she was going to like it. I was imagining all of the bad things that might happen….her crying the whole way…UGH…not a pretty sight….Then a really nice lady sat next to us with her book and didn’t even pay attention to the fact that she was sitting next to a kid. I had my arsenal of toys too (books, dolls, TAD the leapfrog toy) I wanted to be prepared, just in case she didn’t like the flight. BUT….she loved it. She was so very excited when the plane took off. She laughed and told me, in her limited sign-language that she was on a plane, and that she was up in the sky. She saw the clouds and was amazed. Every time she looked out the window and back at me to show me something else, my heart beamed. Can you imagine what it would be like, if you didn’t have the words to describe what you were feeling or seeing? I watched her face and could feel her excitement and new right away that THIS was what dreams were made of. My eyes teared up. After a short while we started our decent. Once again, the giggles and laughter as she felt the plane slow and land, made me laugh. She was so excited.

When we got off the plane and got our luggage we started our venture to the hotel. First it was a shuttle ride. This was also pretty exciting, because we didn’t have to use a car seat. Maddy looked up at us, with her big brown eyes as if she was a BIG girl like her sister. She sat in her seat with the seatbelt on smiling the whole way. We tried to check into the hotel early, but no such luck we were going to have to wait the 4 hours until check in…..So we were off to the strip.

The Sites!

It was HOT in Vegas. Just a little note about Maddy, she takes two types of medication 2x a day for her seizures. One of the medications side effects is that she does not sweat. She just goes from fine to WAY TO HOT in not time flat, so we are constantly checking to be sure that she isn’t overheating. Because Vegas was so hot, we had to keep bouncing in and out of the casinos to keep her cool. We headed to “Paris” and saw the Eiffel Tower, this is where we ate lunch. We saw some amazing fountains and the overspray from them felt so refreshing. We went to “New York” and saw the Statue of Liberty; this was a really big deal to Lexi because her dream is to visit the real Statue of Liberty one day. We went to Excalibur and saw the castle. This was really cool for Maddy, because she got to see one of her favorite cartoon character’s SPONGEBOB! After all of that walking, 4 hours worth, we ended up taking a cab ride back to the hotel, we needed the A/C.

The Hotel!!

After checking into the hotel we went to our room, on the 15th floor. This was so cool because Frank put Maddy on the window shelf and let her look out at the city….SHE LOVED IT!!! She was amazed. She kept trying to tell us what she was seeing, once again how do you tell the people around you, how amazing the things are when you don’t have enough words??? Her favorite spot in the hotel room was in “her” chair looking out at the city. After we got the girls to take a short nap, it was off to find dinner and catch the Mirage Volcano eruption. This was amazing also. Lexi LOVED it, but Maddy didn’t like it so much. She was scared out of her mind when the big eruption at the end happened. She wouldn’t take her eyes off of it, until she knew for sure that it wasn’t going to erupt again. Then we headed back to the hotel (VEGAS IS NOT A PLACE FOR KIDS AT NIGHT!!!!!)

The Doctor’s Visit!

The next morning, Sunday, was our big day. The day that we were excited about. We were instructed to be in the symposium room at 8:30am, because our treatment by Dr. Jean-Pierre was schedule for 9am. When we arrived, we were greeted by Haan Elling, Maddy’s Physical Therapist. Maddy heard him coming from around the corner and let go of my hand and took off running to Haan. It was such a moving moment that it made me tear up. I believe I even saw a little glossiness in Haan’s eyes. She gave him a HUGE hug and took his hand as he led her around the corner and into the room. We all followed and found our chairs. There were about 50 doctors in the room and everyone was so grateful to have us there. Can you believe that? They were thanking us for being there? Then the guest of honor showed up and Dr. Jean-Pierre took the stage after a brief introduction.

Right before we were called onto the stage, Dr. Jean-Pierre explained that he does not treat patients based on what their medical chart says. He treats them based on what their body says, he “listens with his hands”. Then we were called up. Frank and Lexi stayed in their seats and I started to walk on stage with Maddy. When Maddy walks sometimes she is VERY clumsy. In the instance that we started walking, I could tell that this was not going to be very graceful, because there was a video camera with cords running everywhere and chairs on either side of us and people to bump into…..SO…..I scooped her up and had her on my hip facing away from me all in one quick moment and took her onto the stage. Dr. Jean-Pierre started his magic. He instantly asked me to lay her down and went to her head. He asked if Maddy talks, and I said “no”. He said she was very interesting. He said she was VERY INTELLIGENT. He asked how many words she could speak and asked me to get her to say the words…..PaPa, MaMa, baby……Dr. Jean-Pierre is French and I had to pay VERY CLOSE attention to know what he was saying and when he was speaking fast, I only caught every third word. He said that there was a small 2-3millimeter area of damage in her brain and that the connection between where the information comes in and goes to the “language” part of the brain was broken. He said it was actually routing its way around the proper path. He drew a picture up on the board, mostly for the other doctors in the room, but it was very helpful for me to visualize what he was talking about. He checked the signals from both hands and feet to be sure that they were making their way to the brain, and that was fine. The doctor focused on Maddy’s brain mostly. After he was finished treating Maddy it was the other doctor’s turn to ask questions. They wanted to know what “the mom” could expect from this treatment. Dr. Jean-Pierre said that the connection to the language was broken, but he could feel a “thread” of neurological energy getting though by the time he was finished. He said that Madison may never talk, he could not say for sure. He also said that her coordination should get better. He said that it will be up to Maddy. He gave her a tool and that she will need to “process” the information, and then learn what to do with it. She is 5 years old and typically there is an explosion of language at 18mo.-3yrs. 5yrs old is a little more challenging because the brain development slows down a little.

When we were finished listening to all of the questions and answers we headed out. I would have loved to stay and see the other 7 patients being treated, but keeping two kids quiet and still while trying to concentrate on a French doctor is an impossible task. So we left.

Maddy’s doctor Haan, stayed and had the opportunity to pick the other doctor’s brains and speak to Dr. Jean-Pierre about Maddy.


The Trip Home…
Meanwhile we had a little over an hour to go do something, so we headed to the buffet at the Luxor….How can you visit Vegas without going to the big pyramid?

As soon as we were done, we were back in airport and on our way home.

TIRED.

After we got back, we had a great conversation with Haan and we were very glad that he was there. He had a very clear understanding of what we just had done and how to move forward from here.

We feel that this was an amazing opportunity and it was worth every minute of it. What will happen now is completely up to Madison. If there is anything that Madison has taught us it is this….

“Never under estimate Madison”….She has had to work harder then most for EVERYTHING. If you give her the tools she WILL do something with them. She is AMAZING. It is now time for all of us to wait and see what AMAZING THING she is going to do with the “tools” that she has been given from this adventure.

Future Updates……


In order to keep up on Madison’s progress just check back here.


Please keep in mind that I have good days and bad days…this blog allows me to share BOTH from a Mother’s perspective. It is truly a glimpse into my world. Up until now I have blogged it anonymously.

All of our love,

Christa

Where is the MERRY this year?

Wow, this year has been crazy. I think that every person close or near to me is suffering in some way. Recently a friend of mine had her sister die, then another friend had a family member die and then last night one of my dear friends lost someone. How can this be Christmas?

About 3 weeks ago my husband lost his job. UGH....here we are right before the holidays and we have fell into the melting pot of US unemployment. I think I now understand how all of the people in the US are trying to figure out how to put food on the table. Can you believe it? One minute you are working along just fine and then the next you are unemployed. If it were a year ago, one would just go out and get a new job, but EVERYONE is out of work. EVERYONE is wondering how to pay their mortgage AND there isn't an end in site. RECESSION. I am so sad. Luckily my dear sweet hubby went back to work this week. But, I have a much different take on how quickly things can change. One minute we have a job and the next we might not. I think my lesson this week is...BE prepared.

I am so sad for everyone around me. People I know AND people I don't know. I pray that things turn around quickly. I pray that families survive.

#4 - Gratitude

"Gratitude unlocks the fullness of life. It turns what we have into enough and more." ~ Melody Beattie


This little quote is so true! I am grateful for all of the little things. Her are 2 more things that I am grateful for.

#4 I am grateful that I am a mother ~ I am grateful for the fact that moms have a special kiss that can make most things better. I am grateful for the hugs, smiles and kisses that I get from my kids!! There really isn't anything more that I need (well except my wonderful hubby). I am grateful for my kids.

Fun little activity...

Hey there, this weekend was fantastic! We had the chance to play in the sunshine and it was GREAT! Our whole family went out and raked leaves, actually it was kinda pointless because they were falling off the trees as fast as we were picking them up.....but in the mist of trying to get some yard work done, we had a HUGE pile of leaves. My girls were having the time of their life! One of them would hide in the pile, while the other one ran an jumped in. It was so fun to watch. It just took me back to when I was a kid ...THAT WAS QUITE SOME TIME AGO!! It was really a blast. We had a leaf fight and took turns throwing them up in the air....it was so fun. I love this time of year. The holiday's are here and everyone feels happy. Children's laughter just warms the heart.

I was thinking about fun little projects that we have done with our family and I thought I would share one. It is simple enough that even our SPECIAL little people can do it.

Button Cap or Rainy Day Hat

Get an old had or one that you just won't wear because it is too big. Get a bunch of buttons (I keep a jar of buttons and add to it as the goes on, a thrift store has buttons for cheap also). Take a bottle of glue and put little dabs of glue all around, let your little one put on as many buttons or beads as they want. The more buttons, the better. If you child is like mine the small buttons are things that she likes to put in her mouth, so I use the jumbo buttons. They look SO cute. I also like to take "puffy paint" and write my kids' names on the hat in their favorite color. Let the hat dry for about 24 hours and then it is ready to wear. My little ones LOVE wearing their hats around the house.

Dr. Visit AGAIN!

We had another Neurologist Appt. yesterday....I feel like that is all I report about....I really can't wait until the day that I don't have ANY unroutine (is that a word?) DR visits.

I had to report that my little one is still having seizures, this time though, I kinda felt like Charlie Brown when he was talking. All I really heard was blablablabla...bla...blabla......I felt like going to sleep, my eyes wanted to shut and I really didn't hear anything that he was saying. Do you think that I really was tired? Maybe it was the lights? Maybe I am just tired of NOT KNOWING what the hell is going on? He spoke about putting this little thing in her that goes right above her heart and sends shocks to her VEGA? nerve every 5 minutes....are you kidding me? I don't think I am ready to give my daughter SHOCK THERAPY.....For now we just UP'd her medication AGAIN!

I think the only reason that I am frustrated is because she is so darn CUTE and HAPPY that I just wish everything else would go away. Why should she have to struggle? Maybe the struggle is all mine?

What are you GRATEFUL for??

My 7 year old daughter came home on Monday, with a very fun project that she had to do. Her teacher told her to come up with 5 things that she is grateful for. HMMM...I was intrigued as a mom to see what SHE was grateful for...so I didn't say anything and sat back to let her explain her whole project.....Let me explain a little bit about her....she is 7 going on about 15, very intelligent and thinks that I either don't know anything or don't understand anything that she says to me. I know she is probably just like every other kid out there, but I really thought that she "wouldn't know everything" until she was at least a teenager - WRONG!! The wars have already begun.

Back to her project, she told me in detail about what her teacher expected from her and how exactly she was going to do it. I said "have you figured out what you are grateful for yet?" She smiled and said "SURE, I am grateful for my family, because without them I wouldn't know love. I am grateful for food and water because with out food or water we would starve and die, and water helps us cool off in the summer. I am thankful for school because if we did not have school, we would not be smart and we would not be able to meet new friends. I am thankful for my sister, because I love her and she is fun to play with. And, I am thankful for warm clothes to wear when it is cold." I listened very carefully to her very simple but compelling list of 5 things that she was grateful for and realized that I MUST BE DOING SOMETHING right! She didn't say that she was thankful for a video game or candy. She didn't say that she was thankful for toys or "stuff"...she was really thankful for ALL the things that I would have had on my list.

That got me thinking of a time that I said THANKS....My youngest daughter has some very unique challenges and early on in her life she couldn't walk. We had to go through some very intense Physical Therapy, along with Speech Therapy, Occupational Therapy AND we had a Child Development Specialist that worked with her as well. After a couple of years, these wonderful people helped my little girl learn to walk...first in a walker, then with leg braces and finally with out any assistance. How could I ever possibly show my gratitude to these wonderful people? I help people publish their own personal stories all the time, so I thought I would publish a "How Do I Say Thank You?" story just for them. It told how each person has touched my daughters life with their own personal magical touch and how we would not be where we are with out them. We gave it to them at Christmas time and watched their eyes fill with tears as they read their story. It is amazing to me that I still see that "Thank You" book on their desks and in their living room, even after a few years have gone by.

GRATITUDE UNLOCKS THE FULLNESS OF LIFE. IT TURNS WHAT WE HAVE INTO ENOUGH AND MORE. ~ Melody Beattie.

So, let me ask you.....What 5 things are YOU grateful for this year?

My little piece of heaven....the "property"

Back in the swing of things :)

I'm officially back. I got a question for ya?? Have you ever had a bad day for no good reason...and then find out that one of your kids is sick? It is the strangest thing. Yesterday, I felt "off" and couldn't explain it. I really wasn't upset, nothing was really wrong, but I felt like something was wrong. When my youngest got home from school she was a little quiet, I know that sounds strange for a kid that doesn't talk to be quiet, but she was. She fell asleep at about 5:00pm and I kinda knew something might be up. At about 2am she started to cry. I listened for a minute to see if it was just a bad dream or more...have you ever seen that commercial where thee mom and dad are laying in bed and they hear the kid cry, the dad says did you hear that and the mom says "was it a mom or a MOOOMMM?"......it was kinda like that. I jumped out of bed fast enough that my husband got up too. He said what's wrong? I ran to my daughter (I know a little dramatic but for my 4yr old to cry like that is really NOT normal...so I knew something was really wrong, actually I thought it was seizure related at first). I took her to the couch and then.......we were running to the bathroom.

Man, it is horrible to have to hold your 4yr olds' head over the toilet while they scream and cry because they don't like to throw up.....

She is better now!! She has a temperature and is watching the Little Einsteins right now and it gave me a good excuse to keep her home from school so that I can take care of her.