Monday, August 24, 2009

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

Thursday, August 20, 2009

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 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.


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 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 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.


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

Monday, August 17, 2009

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 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

Tuesday, July 28, 2009

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.


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.


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,