Thursday, December 27, 2007

The Power of Story!

Many of you have heard me speak about the "Power of Story", but this year I had the wonderful opportunity to see it in action (yet again). The "Power of Story" is pretty simple if you think about it. It is the ability to connect people, generations, history, families, friends through storytelling. Storytelling has been around for generations and has been a common form of tracking history for ages. It has been a proven form of remembering events and people.

With today's world and the technology that we have, most people have gotten away from sharing stories. I have the HONOR of working with people to capture their stories and preserve them in beautiful books. I think that the best part about what I do is that I do not have to worry about the stories being forgotten. I help people write their story so that they can be remembered the way that they want to be remembered.

I guess that is where this story comes from...

Christmas is an exceptionally busy time of the year for me. People are trying to capture their stories and give them as gifts to their friends and families. This Christmas,I had the HONOR of working with this fantastic young lady. She had decided to write a story about her grandmother. They live very far from each other, but the granddaughter wanted to give a very special gift and she had chosen to give the "gift of story" this year.

I personally know the grandmother and couldn't wait until she got her book. She sometimes feels very lonely and forgotten, but tries to be tough through the process of growing old. She has told me on many occasions that "when you get old, they young kids in your family get too busy to visit you". She has also said that the "kids today are too busy to sit and talk with her." The sadness I feel from those discussions is deep. I think deep down, I am afraid of growing old because I don't want to be forgotten or lonely. Well, I started working with the granddaughter and managed to help her capture a very remarkable and inspiring story about her grandma. She found some fantastic old photos and her original birth certificate (an 84 year old certificate). We wrote about her grandmother's service to the Red Cross during the war as a nurse and many other wonderful accomplishments. It was nice to see the gap between the grandmother and granddaughter grow closer together as this process took place. Through this process the grandmother did not know that there was going to be a book written about her, that part was going to be a surprise. She only felt the desire that her granddaughter had to know more about her life.

On Christmas the grandmother got her book.

I watched her carry her book from house to house showing each new person HER story. She was so proud! She was not going to be forgotten. Someone cared about her enough to take the time to listen to her. Someone paid close enough attention to what she was saying and then put her words with some pictures and captured her story. On one occasion I witnessed her tear up as her great-granddaughter (6 years old) asked her questions about her life and wanted to know more.

The Power of Story! What a concept. I am grateful that I get to share in this process with both the old and the young!

When was the last time that you asked someone about their story?

Saturday, December 15, 2007

A Little Christmas Magic

As a parent I often give myself the parental all probably know what I am talking about. It is the quiz about am I raising my kids right? Am I giving them all the tools necessary for them to be good people when they grow up?

At this time of year it is really hard to keep kids grounded. Every time they turn on the TV there is another commercial with a new GREAT toy that every kid MUST have. Or maybe you are going to the mall to fight the mad rush of shoppers so that you can get the once a year picture with Santa. While sitting on Santa's lap all of the kids are supposed to give their wish list. Maybe they write their local paper the "Dear Santa" letter asking for all of the things that they want. It really is a little bit overwhelming.

This year my daughter is 6 and she doesn't have a list of stuff that she wants. YES, I am as bad as everyone else. I want to know all of my precious littleone's wants so that I can be sure that she is happy on Christmas morning opening all of her little hearts desires. I have asked her several times what she wants. She always replies that whatever Santa brings her, she will be happy with. She said that she really doesn't want anything except her family. For as amazing as I think that this is, I would like to share her comments to me tonight......

As I was watching one of my all time favorite movies (The of the best movies ever...) my little one came to tell me goodnight. I invited her to curl up next to me and watch the movie for a few minutes. She said yes and sat beside me on the couch. She glanced over to the Christmas tree and said "our tree is so pretty, I really love it. I think it would be pretty with out any decorations on it. What a beautiful tree. Mom, can you imagine that some people don't have a Christmas tree? Imagine this Mom, imagine our house with broken windows and broken boards for the walls. Can you feel the cold wind blowing on us mom? Imagine no blankets. We have pillows but we have to sleep on our dirt floor. " She then said "Imagine Mom that some people don't have food. Imagine that Mom, some people don't even get to have a Christmas dinner."

Then there was a long pause....

"Mom, I bet you know what I want for Christmas." I sat there quietly just looking at her and then she proceeded, "Mom, all I want for Christmas is for all of the people in the world that don't have good homes or food or blankets to have a warm place for their family. I want them all to have a home like ours. They don't have to have a Christmas tree, but if they have a warm home with a good Christmas dinner, that would be good."

I sat there feeling my emotion start to swell. I simply said "I agree honey, that would be nice. I wish for the same thing." She then told me that she was tired and went to bed.

To all of you I hope that you have a VERY MERRY CHRISTMAS and a HAPPY HOLIDAY!

Tuesday, November 20, 2007

Slow down and kiss your kids!

Life comes at me so fast sometimes. I swear, I think I blink and a month can go by. Sometimes I sit and ponder what could I possibly be doing? My Husband thinks that I am sitting on my butt eating bonbon's...LOL...I wish that was true...LOL. As I sit back and analyze all of the hustle and bustle going on in my day to day doings it dawns on kids....I am doing all that I can for my kids. THAT IS WHAT I AM BUSY DOING!!! Being the best mom I can be.

I guess at the end of my exhausted day I should be counting my blessings because I am the mom that gets to volunteer in my kids' class rooms, take them on every field trip, attend every party and be there to pick them up from school. What a life. I am busy...doing all of the right things!

With this fast paced life that I have created, I sometimes feel like I am not doing all that I can in all of the other areas of my this blog. I have failed to update all of my friends that we have gotten our MRI results back and they were "unremarkable", which is a good thing! That means that they can't find anything wrong with my little M's brain. But we are still having seizures and all of our little obstacles....the good news is that the doctor's can't find anything wrong which increases our chance to out grow our problems. For now it sucks because we live with this little cloud of mystery....we are a MEDICAL MYSTERY! For now I am happy!

Wednesday, October 3, 2007

We Made It!!!

Well, today was the day, we had our MRI. We survived it. It was a very long day that was full of stress but everyone made it ok. My little one is a little shaky and can't really walk right now because of the anesthesia but I am so relieved that I have given myself a headache.

We started out our day at about 8:30am driving about an hour to the hospital. Once we were admitted we had the anesthesia pre-op and that took about 30 minutes. After the pre-op they gave my little one some medication that started to make her "relaxed". I noticed that her speech, what little she has, was very slurred and very hard for her to get out. After being observed for about 20 minutes I was escorted out. I'm pretty sure that I was OK up until this moment. Once the nurse took me out of the MRI room, she told me that it was going to take about an hour and that I could go to the cafeteria for about 30 minutes. After that, I need to be in the waiting room, just in case they need me.

I went to the cafeteria and had a hot dog, but felt guilty because my little one hadn't eaten since 6pm last night. It was now about 11:30 and I was starving. Part of me thought that I need to wait to eat until she can eat that way she isn't going through it alone and then the other part of me thought....well If she comes out of sedation starving I will never get to feed myself because I will be taking care of her. (Some times mom needs to remember that it is OK to take care of herself first). After I ate a hot dog in about 5 minutes, I went back to the waiting room just in case they came looking for me. I waited and waited......then the sirens and lights went off....CODE RED! CODE RED!! I panicked...this was about the point that my little one was supposed to come out of sedation. Had something gone horribly wrong? What the hell.......CODE RED! CODE RED!!....ok where were all of the running doctors? No one was running into the MRI room....where was everyone? CODE RED DRILL OVER! It was a DRILL!!! I almost had a heart attack over a hospital drill?! Then I continued to wait for someone to come get me. Remember it was only supposed to take 1 hour....well it has now been 1.5 hours and I was now pacing the room. What the hell? Don't they know I am waiting for them? How is my baby? THAT'S IT, I'M GOING TO FIND OUT! I went into the MRI check-in booth and inquired with the receptionist. She said Ma'am your daughter is OK and they are coming to get you now, she is in recovery. WHEW! The relief alone is enough to make me cry. I headed up to recovery and found my little angle asleep with an oxygen mask on and all of the machines hooked up to her. I sat beside her for about 2 hours until she woke up and was able to keep down some apple juice. Then they let us go home.

Thank God that we are home safe again! Thank God that we made it with out any problems! Thank God!

A Special Moment

Yesterday I had to pop into my daughter's preschool class. When I went in it took a minute before the kids knew I was there and then it was complete class disruption. My little M saw me and said "MaMa" which is a delight in its own because for as long as my daughter could talk she has been saying "PaPa" for her daddy. It took her until she was about 3 years old before she could actually say MaMa intentionally. Well, today when I went and disrupted her class she got out of circle time and came over to me, I was a little preoccupied writing a check for pictures, and gave me a KISS!!! She has never before walked up to me and kissed me! My heart filled with such joy! I think it would probably be hard for someone not in my position to fully grasp what a wonderful thing it is to have your 3.5 year old give you an unexpected kiss. I no longer take for granted the little things, every little thing is a big accomplishment.

I LOVE my daughter.

Monday, October 1, 2007

The twinkle in her eyes...

Have you ever looked into eyes of a child and seen the universe? Maybe everyone has experienced that I'm not sure, but my little one holds the key. When I look into her eyes it is like seeing thousands of twinkling stars shining so brightly that you can't look away. Her eyes smile. My little M doesn't talk, she uses sign language, but sometimes when you look into her eyes you can almost hold a conversation. There is a purity to her that can't be denied. Sometimes when I look into her eyes I think I see straight into heaven.

Thank you God for sending me such a special little gift. She is my purpose, my joy, my love and my inspiration.

Anxiety for the MRI

Ok, so Wed. we are having another MRI. This totally sucks. Friday we saw our Pediatrician and let me tell you, it was quite a visit. It was supposed to be just another pre-0p for him (is your child sick - no, has she had any congestion - no....bla bla bla), it was supposed to take a whole 15minutes tops. An hour later and half a box of tissue I walked out of his office. Sometimes when you have a really great doctor they can make everything seem better, even if it really isn't. I asked him if I was keeping him from his other patients, in between tears and his response was "don't worry about it, they can wait, your are the one who really needs me right now"! It was really comforting. He reminded me that a child reaches their weakest point for seizures at 3 years old and then their resistance starts to go up from there. After he told me that, I remembered that our Neurologist had mentioned that to me, but really in my crisis moments I do not think of those things. I actually felt a little more reassured.

Now I am supposed to watch my little one and make sure that she doesn't get sick or congested. I know I am freaking myself out but my husband was sick all weekend. I had to quarantine him into the back of the house.

I'm not sure if you know or not but when a sick little child gets an MRI it is VERY serious. They have to be completely put under in order to keep them from moving. The risk of putting a sick child under is taken so serious that they have all sorts of specialists on hand just in case they can't wake up your child. Meanwhile the parents are waiting in the waiting room hoping and praying that nothing will go wrong. It is nerve wracking and excruciating to say the least. Then they wake up your child....there is crying and observations that take place. Can you child keep down fluids, are they showing any side effects.....UGH. Not to mention the starving that takes place prior to the MRI.

I know I am probably over reacting, but the things that go through my head could drive me CRAZY.

Tuesday, September 25, 2007

I am having a SPECIAL NEEDS moment!

I am having one of those moments! You know what I'm talking about, one of those moments when everyone seems like the enemy. I was fine, my day was typical and then I got a call. It was my little M's teacher. She said that M was "a little off" today. M has a seizure disorder, Ataxia and global delays. Talk about a combination. Today it appears that little M is very stumbly. Is it because her medication is affecting her? Is it because she is coming down with a cold, maybe she is just going through a growing spurt. UGH!!! Where the hell are the doctors when you need them? Actually, what the hell, where the hell ARE the doctors. The so call people who are supposed to have the answers? All I have ever heard is "I'm not sure what is wrong" or "nothing is showing up on the tests, so my guess is that she is going to out grow these things". Meanwhile, I have a beautiful, happy and determined little girl that is working harder at the little things than other kids I know. Explain to me how to say OK and accept these answers. My obsessive compulsive side thinks that I should start taking classes and become a doctor. Maybe I will be the one who gives a damn. Maybe I will be the one that looks for the cause and solution and not just move on to the next patient.

The medical industry leads everyone to believe that we have made these great strides with medicine, and maybe we have, but we are still in the dark with just about anything that has to do with the brain.

What about diet? Is it possible that the food she eats, the drinks she drinks, the air she breaths could be causing some sort of allergy? I once saw an article about a little girl that was allergic to water! How the hell did the doctors figure out that one? Maybe the answer is obvious but I am not educated enough to ask the right questions to trigger the doctors to think in a different path.

As soon as I get on one of my rampages the doctors scramble for a little while. Now my rampage has gotten us another MRI. This is only our 3rd and she isn't even 4 yet.

Monday, July 30, 2007

On our way to the NICU

Well, we are all loaded up and my precious little girl is strapped down in the incubator, heartbreaking, and we are on our way to the hospital.

I guess I should tell you that my oldest daughter was at home, for about a week now with grandma, and doesn't know exactly what is going on. The last thing that she knew was that mom was going to the hospital to have a baby and hasn't come home yet.

On our way to the NICU we stopped by the house so that I could give my sweet little girl a big hug and kiss and tell her that I love her. Have you ever had so many things go wrong that you grab onto the "normal" things so tight just to maintain sanity? My world was out of control and the only thing that I really knew was that when L was hurt all I had to do was kiss her and everything would be better, and now I had M in the hospital and all the kissing in the world could not fix her. Kissing her wouldn't even tell me what was going on. I was out of control and for a control freak like me, I was out of my mind.

Thank goodness for my husband! I had never given him credit before. I had, or at least I thought I had, taken all that life had to offer and filtered what I passed on to others around me, including him. I sometimes felt like I was the only strong one. I soon learned that I was only as strong as my kids were. They are my weakness.

After I went home for a brief moment, we made our way to the hospital. WOW, what a traumatic experience that was. We made our way through the maze of halls leading to the baby NICU and when we entered we were pounced on by all of the nurses working there. "WASH your hands for 1 minute" they demanded. They really didn't even know why I was there yet! After I followed their regimented cleaning system and got sterile, I was allowed to show my pictures to verify my identity and see my daughter. Oh the trauma! The NICU is not a fun place. This is a place where you find the smallest, frailest, sickliest and loneliest babies. It is sad to say that many of the parents for the children in the NICU (while I was there) had abandoned their babies. The nurses, lovely and kind nurses, had taken it upon themselves to hold every single abandoned child in their arms. Rocking and singing and just plain loving the little angels that have no one else.

We found out little M and touched her frail body. She had to lay on a baby bed/table with these heat lights on her. Then we started meeting all of the specialists that were going to be helping her. The started another array of tests and waited and watched for some sign of what might be going on. NOTHING.....that is what we found....NOTHING! I stayed in the hospital for two weeks, right by my baby's side, and all we really found out was that my baby was having seizures and they don't know why. We were put on some medication that was supposed to control the seizures and finally released from the hospital. What was I supposed to do now? How was I supposed to continue on? What was wrong with my baby? Am I going to break her? What if she has another seizure? Is there anyone else out there going through this too?


Sunday, July 29, 2007

In the beginning

I have decided to start a blog and like most people that are new to the blogging world, I will start by saying that I am new and probably not very good. I promise to get better though!
How many of you have a child with special needs or know someone who has a special needs child? Not sure what I mean by "special needs child"... Well let's see...that could really mean anything. Does your child have motor delays, physical challenges, health issues...etc.? If you answered yes to any of these it probably means that you know what I am talking about. If you don't know just keep reading and you will have a pretty good understanding of what it is all about.
I have a daughter with special needs, she is a little over three and has seizures, gross motor delays, fine motor delays and doesn't talk yet, which means that she has speech delays. We have been through every test that you can imagine (would never wish your child to go through) and do not have a diagnosis. It totally sucks! She is truly fantastic and works harder on things that most people take for granted and doesn't complain a bit. I have to push her everyday through physical therapy, occupational therapy, speech therapy and child development classes. As a parent I feel it is my duty to give my little one every possible opportunity to do and be all that she can be. Sometimes I just sit back and ask myself why does it have to be like this. Why does my baby have to go through so much already?
When my little one was born, she was born not breathing. The doctors put her on my belly and I looked at her and saw that she was blue and not crying yet...I panicked and said "why isn't she crying?" The doctors and nurses rushed her off and started to work frantically on her. My husband and I just sat there holding our breath. Could you imagine? Here you have a new born baby lying on a metal table with bright white lights shining all around, about 10 nurses and doctors all around, each doing their small part to figure out what is going on. My heart stopped beating, I held my breath, my eyes filled with tears and all I could hear where the medical jargon going on across the room. What an absolutely horrible 3 minutes. Yes, it took 3 minutes for her to start breathing. The doctors didn't know why she wasn't breathing, they said maybe it was the shock of birth. Have you ever heard of such a thing? All I could do was take the doctors for their word and hope that they knew what they were talking about. Then the "normal" new baby stuff took place. Well, as normal as you can get after being in absolute panic and shock. The doctors went on about their business as it nothing ever happened. After we got put into our mommy and baby room we waited for the hours to pass, getting to know each other, so that after 24 hours we could go home. The only problem was, things weren't normal. After about 7 hours we had these bouts where she would go "dusky grey" and stop breathing. I was the only one who saw these things because by the time the nurse came she was normal again. UGH!! I thought I was going crazy. It continued to happen every so often and after each episode the doctors would start our 24hr clock over. You see we had to go 24hrs with out an episode before they would release my daughter from the hospital. We would go 7 hours then we would make it 12 hours... and then we had our first "seizure".
My little baby was in my arms nursing, wires were attached to her arm and an IV in the other arm (this is something that no infant should ever have to go through)! She had been nursing for about 10 minutes when all of a sudden she started to convulse. Talk about guilt complex! I thought it was me that gave her the seizure. The doctors ran from all corners of the room to see what was going on. That is when the tests began. We were rushed off for a CAT scan, then spinal tap, EEG, EKG, every possible blood test....but no explanation. Then we were rushed off to the NICU (Neonatal Intensive Care Unit) in a different hospital where they specialize in children. My little baby was put into an incubator and strapped down. They took pictures of her and gave them to me so that when I got to our new hospital, they would let me see her (basically this was my proof that I was Mom), because I wasn't allowed to ride in the ambulance with her. Imagine for a moment how lonely it would be for both me and my baby. After she was taken from me, with tears streaming down my cheeks, we ventured off for the 3 hour ride to the new hospital....